Saturday 29 December 2012

The damaged child...

I was listening to Radio 4 the other day, and caught bits of a programme about abusers and abused children. I don't remember every detail, but one thing that sticks was that a child who is abused, either verbally or physically has different brain development from one who is cherished and cared for. And that constant shouting can affect brain development.

OD has always held that SD2 is a challenging child because of constant negative feedback from her mother ( i.e. THAT woman). I've always remained fairly neutral on that stance, as I don't have her side of the story. She does like shouting though, as the only contact I have had with her, is hearing her shout at him or the children down the telephone.

SD2, who is 13 has been incredibly difficult over the last month. She has periods of obviously trying to be nice, and then has a complete meltdown. On our transposed Christmas Day, the 23rd, OD has a tradition of one of the children lighting the candle, to "let baby Jesus know that he is welcome in this house". He'd already said that SD3 could light it, when SD2 arrived and started kicking up a fuss, saying that it was her turn. It culminated in her shouting "F*ck this...", and running up to her room. I made the mistake of trying to reason with her, and was subject to a kicking, spitting, screaming child...much like a toddler having a tantrum. Only this "toddler" is taller than I am. After the tantrum ran its course, OD spoke to her, and she did apologise ...but the day was rather spoiled.

She was in a touchy mood when we left for France, because she'd misplaced her coat. Unfortunately, her habit of being messy and throwing things about does lead to things going missing. She does however, have a nasty habit of accusing everyone around her of having stolen/moved her things and lashing out. She'd calmed down by the time we got to France, but again had a hissy fit after she was asked to put her things away. This time, there were threats of.."If you don't let me have what I want..you'll be sorry...my behaviour will be even worse..&*&**&&^%^&......". OD had to win that power battle, but it was extremely difficult to stand back and not do anything while she was kicking and punching him, and finally ripped the pocket of his favourite jacket. (As an aside, it's my least favourite jacket....apple green...really?!...!).

She's since apologised and has been nicer....but it doesn't strike me as normal behaviour. There has been mention of a behavioural psychologist..but it's rather like living with an active volcano, waiting for it to erupt.

Fun and games!

Friday 28 December 2012

...miserable, diseased, dirty, ex-mistress....

OD joined a cancer forum, called the Colon Club. It's American, and its seems great.
He showed me his first post...which was honest, and heart-wrenching. I haven't posted a link, because this is a semi-anonymous blog, and one that I haven't shared with him yet. Too much ranting and all that...but extract from his post below....

" In September I was counting my blessings .......... My personal life was looking good with a promising relationship that seemed set for the long term and we were contemplating starting a new family. ..... On October 3rd I contacted a friend who agreed to do a colonoscopy a couple of days later. On the 5th of October, my life came to a crashing halt: Stage 3C cancer at the recto sigmoid junction. I had a laparoscopic anterior resection 10 days later that removed a moderately well differentiated adenocarcinoma T3N2M0 with 5 of 35 (or possibly 25) positive nodes.

I was sort of processing this information intellectually but it took another couple of weeks for the subconscious mind to take proper notice. When it did, its reaction was to curl up and want to die. Literally everything went off the rails for a couple of months........ my young partner's misery was almost more than I could cope with .......


As a former surgeon who had spent years managing patients with metastatic cancer, I probably know more than is good for me about the disease, but for weeks I could only think about those patients who had a bad outcome and not those who had lived life to the full.........feeling much more positive...."










I am very aware that I have not been handling the diagnosis and his reactions particularly well. I'm also very aware and anxious about being a "cancer bore"...you know the "sad girl, who's partner has cancer...". It's not a great label. The blog is good for ranting...catharsis.

But sometimes, I do feel like one of those people who are so freaking miserable that they can't be around normal people. Like I'll infect the happy people. Like I'm some miserable, diseased, dirty ex-mistress.

I'm not an ex-mistress.....but Meredith Grey's words from Grey's Anatomy sum it up pretty much.

This is also an apology to those of you, who I have been inflicting my rants and moans and whines on...I could consider a New Year's resolution of not being so ranty...but I'm not sure how long that would last!

(Two posts in one day...can you tell I'm work avoiding..?!)

Life's too short..?

The last two weeks have been super busy. OD drove out to France, and spent a couple of days there with his slightly batty, but remarkably kind Kiwi pal. I had lovely friends up to visit from Edinburgh- the weather in Manchester, for once, was not dreadful, and we did some National Trusting, overeating and lots of catching up.

The following weekend was also busy with the dreaded literature review. It's a requirement of anal Uni of Manc to submit a Lit Review, to "enhance understanding of the PhD thesis". Mine, was read, in fine detail, by not one..but three supervisors. Who made LOTS of comments...some of them were...." Didn't you read my marvelous paper on x, y and z...I know everyone else says, a but..I think it's b....". Thus, the build up to Christmas was filled with corrections. If they are so anal about a 30 page piece of work...I can't imagine what they are going to be like with the final thesis!

I also decided to opt out of an additional exam I'd planned to take in March. The stress of trying to revise, while doing the science thing and coping ( or not..as the case may be) with the issues around OD and his disease were taking my toll. After I cried in front of one of my bosses...I decided enough was enough. I needed to remove a stressor..and the exam was the most logical one. I'll probably regret it when I'm trying to finish writing a thesis and revising for the exam in three years time..but heck...I might have had a career change then anyway!

OD and I have had several other arguments and heart to hearts. I got cross, because I thought he needed to pull his act together, and start to function. I made him cry..again. As he says, unless you're in the cancer club ( the one , no one wants to join..), you don't really get it.

Christmas itself was not a complete blow out, but was fairly miserable for both of us. He had his infusion on Christmas Eve, the first cannula blew, and he had to have multiple stab wounds to his forearm, to stop the oxaliplatin from accumulating. Then, he had to have the infusion in the other arm. Which meant, that he didn't have time to buy presents for his PA and his sister. Yours truly then, had to do the rush to John Lewis at 4pm and pick out suitable gifts things. I HATE LAST MINUTE shopping. We then had to endure ( enjoy for him) a catch up with some of his college friends.

I could blame tiredness, or just general pissed offness at the world, but OD's disorganisation had also extended into forgetting to buy me a Christmas card. It was a stupid mistake on his part, and I over-reacted slightly, and so did he...at like most of these fights, it descended into 48 hours of coolness and sniping. He'd also recently told me that he'd restart smoking soon after the operation. He hadn't told me...but I'd suspected it.

No excuses, I should have picked the battle better...but I guess we've made up now.

Sometimes it's hard to believe that only last year, we had a fabulous Christmas together, and we were both looking forward to 2012. Now, I can't really see a way of us having a long-term future. It's like the elephant in the room..and the elephant has left a great big pile of poo...

Much like my first attempt at the Mary Berry Yule Log...




Luckily..this was the trial run before the actual Christmas dinner.




Hope you all had a merry Christmas and best wishes for 2013.



Wednesday 12 December 2012

The Last One of the Millenium

It's a special day today. 12.12.12.
Unfortunately, the only thing I did to mark it, was to call OD. He likes palindromes and such like.

OD is doing the killer drive to France to deposit the car there. We're flying out on the 27th of December, but a week's car hire would have cost the same as the tickets. I was a little worried about him doing the monster drive alone, but one of his nice millionaire friends has very kindly offered to go with him. 15 hours of boring driving....the dude is a true friend.

Which means I'm in the office late, trying to finish a horrid report before the weekend. I'm having my first visitors from Edinburgh, which is very exciting. The house is looking reasonably festive, as we have the tree up. There was some moaning from OD, as I'd asked him not to get a monster like last year's tree. This one is "dainty"..but it's still bigger than me!

I think it looks gorgeous and smells gloriously "piney". And what's even better, is that I managed to convince the girls not to cover the tree in tinsel. Yes..we have a "grown up" Christmas tree.


 Last year, to mark my first Christmas with OD, I'd painted him a bauble. I was going to take the girls this year, but the local pottery shop burnt down! Oh well..best laid plans!.


( Christmas 2011's bauble...Eldest daughter obviously remembered that it was hand-painted and found somewhere prominent and safe for it...awww!)

Friday 30 November 2012

The end of the Cancer Club

OD went to see the oncologist today prior to the start of the next cycle of chemo. He had an encounter with what sounded like a very incompetent registrar, before Dr P rescued him. He's ditching the rubbish anti-emetic ( domperidone) and moving on to the good stuff ( ondansetron).

On a sombre note, OD also went to a funeral. One of his colleagues had been having radiotheray for melanoma. They had joked about setting a cancer club. The man, who is about the same age as OD and with similarly aged kids had been back at work, and then very suddenly had complications and died.

OD started talking about the funeral over dinner, and I had to walk out to stop myself bursting into tears in front of him. It all just seems a little too real.


Sunday 25 November 2012

Sundays....

We had a nice day today. Free Rent Freddy moved out, and I have claimed his bedroom as my sanctuary. It's amazingly quiet- I can even hear the rain dripping on the eaves!

I'm sure it's all psychological, but having a bit of my own space in the house has made a huge amount of difference. I have actually done some work too- which justifies the "study space" argument.

The day was filled with domestic bliss. OD is shattered from the chemo, but with some persuasion made a Sunday roast. It was nice pretending to be normal, and doing the weekend shop. The roast chicken was amazing. My only contribution was the gravy- but they do say the gravy holds the meal together.

Previously, the OD gravy was Bisto stuff. Not my idea of yumminess. But I convinced him to let me try his brother in law's recipe. It was DEAD SIMPLE, but DELICIOUS!

Essentially, all I did was throw in an onion, a carrot and tiny bit of parsnip to roast with the bird. Remove bird,  drain off the fat. Blend the juices, and the veg ( fancy name trivet) together with about 200mls of chicken stock. Nom..nom..nom. No pics, because we ate it all. Every LAST BIT.

Nigella...eat your heart out.

Friday 23 November 2012

The Joy of Science

Everyday I'm surrounded by cancer. It's rather messed up really, that every week when I sit in the multidisciplinary team, I'm disappointed that there is no suitable patient for my clinical trial. I'm disappointed that some poor woman hasn't got the right sort of cancer. Okay, well..the sort of cancer I'm interested in (endometriod ) usually has a good outcome...but still!

I feel like a right old meanie!

I was trying to explain over dinner to SD3 what I do on a daily basis. I decided to talk about the lab stuff...

Me:.....so basically, I grow some cancer cells, and then I try and kill them with a drug....
SD3:...that's so weird!

It is rather! I spent all week trying my first "real experiment". Without too many specific, I put tiny numbers of cancer cells in a 96 well plate, dosed them up with varying drug concentrations and over the last few days, have been checking to see if they stopped growing.

We haven't crunched the numbers yet, but even looking at the well with the highest drug dose, those cancer cells are still too happy for my liking! I don't think the experiment has worked. Apparently, they never really do! One of the other PhD students is at the end of his 2nd year, and he doesn't have any results!

The Joy of Science eh?

Happy weekend everyone!



Sunday 18 November 2012

Private Hell

Weekends are meant to be a time for re-energising and revitalising. So far, this one hasn't quite got to that stage. OD was knackered. His sleep has been worse than ever, and dashing up and down to B'rum and work probably wasn't helping.

He's fluctuating between taking on the deviants at work and getting them in line and saying.."F**k the lot of you, I'm leaving". His mood has  not been great.

We were having a reasonably good day, until 9pm when THAT woman called. Essentially to pick a fight. First, they were discussing Christmas plans with the kids, and she announced that the kids didn't want to spend time with him on Christmas day. Then, she started trying to get him to put the holiday chalet back on the market. Despite the fact that it's the worst sellers' market and they would end up losing hundreds of thousands of pounds, and because of his cancer, he's unlikely to get another mortgage. And after he tried to reason with her, she started up on the.... "It's all your fault, you ruined my life..you ruined your children's lives...etc".

Needless to say, his mood was then awful. Unfortunately, that then translated to "I really want a cigar..I'm going to have a cigar...". He's been off them for 5 weeks.

His argument was that there was no direct link. That was like a red flag to me. I knew that he was well aware of the risks associated with smoking. But it was difficult to have a diplomatic discussion. Particularly after he said, "I'm going to die anyway and the chemotherapy is poisoning me".

I don't know if he smoked that damn cigar. If he didn't, was it worth the fight and seeing him actually break down? He's on an absolute low right now, and is very fatalistic.While, I feel so strongly that he needs to make those lifestyle changes and fight and LIVE.

Because right now, to keep going and to stay here..I need to be positive and hang on to the belief that this is a blip, and there is light at the end of the tunnel.

 

Thursday 15 November 2012

Chemo-Day

OD started chemo this week. It was a long day.
0635: Train to B'rum
0800: Bus to hospital
0845: Arrival on ward and wait for nurse.
1100: 2nd attempt at cannula.
1140: Chemo starts.
1350: Chemo finishes. Nice oncologist comes in for a chat.
1500: "We cocked up, and haven't got your oral chemotherapy ready yet. We have ABSOLUTELY no idea when it's going to be here. Why don't you go home and pick it up later..?" " Emm...because we live RATHER far away."
1600: Arrive in  B'rum City to try and get some edible food.
1605: Phonecall from ward:  Your oral chemo is ready.
1610: Bus back to hospital.
1700: Back to city for food and train.
2100: Arrive back home.
You can get the man into a "sick-bed", but you can't get him out of his suit.

It was only the first time, so perhaps things will be a little more streamlined in the future. I was knackered, so I can't imagine how he must feel. Luckily, the intravenous chemo is only once every three weeks, but the side effects started almost immediately. We'd both read the helpful Macmillan sheets, and some of the side effects just sounded weird. ...Pins and needles, funny taste in your mouth...

They didn't sound horrendous. But actually, painful pins and needles in all your extremities, made worse by the cold ( it's November...!), everything tasting slightly metallic, fatigue.... Perhaps, if you just had one symptom, it would be bearable, but the combination of all the little insults add up.

I feel bad for him. The whole situation is crap. And yet, I'm finding it difficult to be the all understanding, all forgiving girlfriend. I'm trying to not react when he's snappy or irritable or morbid, but it's not easy.

I also had an unpleasant suprise last night. In a fit of domesticity, I went up to the loft to tidy away some books. One of the kids must have been going through the boxes because there was a huge pile of photos on the floor. I made the mistake of glancing through them as the top few were of OD and his siblings in their youth. And then I found the cheesy photos from his wedding day to THAT woman.

It's not as if I didn't know he'd been married before. After all, the four kids are a constant reminder. But I still had a completely visceral reaction to those pictures. I tried to do the right thing and not let the reaction affect my interaction with him. That didn't really work. There's only one thing to say.

It's all a big, god-awful, soap-opera-worthy,  freaking, mess.

 I could ask "Why me?"

“To the dumb question "Why me?" the cosmos barely bothers to return the reply: why not?”
Christopher Hitchens, Mortality

 

Sunday 11 November 2012

Waving a white flag

Free-rent Freddy aka the ex-au pair is moving out soon. I don't know whether I will miss him. OD's kids have had au pairs around for as long as they can remember. Thus, by and large, they don't tidy up after themselves. Who can blame them... they actually did have a magic "cleaning up after, laundry doing, picking up" fairy.

Freddy used to keep the place tidy, but wasn't very good at getting the kids to participate. I guess it was easier just to do the work, then to encourage audience participation. Since he started his full-time job though, he hasn't been doing as much. His interaction with family life has been minimal, and he spends most of his time cocooned up in his room. His contract with OD  finished in July, and the agreement was free board and lodge in return for continuing to do his bit of cleaning etc.

That hasn't really happened.

Over the last three months, I have been trying to adjust to life with four teenagers and one adult, whose standards of cleanliness are very different from mine. I don't think I have OCD, but I'm not a fan of crumbs, cups and saucers on every surface, etc. It must be the a "growing up in the tropics" kind of thing. If you left crumbs on a surface in Malaysia, you'd have an infestation of ants within hours.

I initially tried to tidy up after everyone. That didn't work.

Then, I tried the gentle encouragement to get them to tidy after themselves. That worked a little, ( some more than others), but wasn't a huge success.

More recently, the mess and feeling that the kids are not pulling their weight with regards to chores has been a source of conflict between OD and I. I floated the idea of a weekly task list past him, which he agreed was good in principle, but has failed to implement. I seem to have fallen into the "bad cop" role.

Last night, after I spent the evening cooking for a couple of his friends, OD asked the older two to clean up after dinner. Needless to say, it was not done properly ( my pickiness..? perhaps?). But after having to stand over them and instruct, I lost the plot slightly. It didn't seem fair in my head, that I was effectively doing the cooking and the washing up.

[Oh wait- he has cancer. And his horrible cow of a girlfriend is making him do the washing up?!!!]

We had terse words, and I punished him in the most passive aggressive way ever. I kept stealing the duvet, leaving him with a frozen bum!

This morning, we haven't really discussed the issue any further. The kitchen is covered with crumbs and plates. I'm now going to have to try plan D. Wave the white flag, accept that the mess seems integral in the lives of the ODs' and try to be a zen-like about it.

And when Free-Rent Freddy moves out, I'm converting his room into my study/sanctuary/CLEAN ZONE.


Friday 9 November 2012

Is it possible to leak snot out of your ears?

***WARNING MILDLY GRAPHIC POST***

I'm having a "feeling sorry for myself day". I have the starts of the annual winter cold, with the prodromal sniffles, aches, mild fever and tickly throat. I toyed with the idea of VICKS FIRST DEFENSE, but my sceptical scientist mind doesn't think it will work. Plus, it's bloody expensive.

Instead, I found some effervescent Vitamin C, and have watched the Season 3 of Gavin and Stacey.

OD headed in for an important meeting at the usual 0545 start, which meant my plans to lie in went out of the window. I did manage to fall asleep but was woken up by a text from one of my Yummy Mummy friends..
"Ummm....is it possible to leak snot out of your ears?"

Her almost 2 year old has been running a temperature over the last few days, and "snot erupting from ears" sounds very much like otitis media or a middle ear infection. We had a brief chat, while the poor kid wailed in the background. I attempted to empathise with him but trying to explain the solidarity of being ill together to a toddler wasn't a great game plan.

I'm on my second cup of lemon and ginger while trying to function. I'm not sure if preventive strategies are good for things like viruses. I know they are definitely not good for spots. You know when you feel a spot erupting, and you slather on the OXY-10/Clean and Clear/Free Derm . And it does stop the spot emerging to the surface and seems to dry things up, but I still find that there's still the tiny focus of infection underneath, that continues to rumble, and the whole thing takes ages to clear up. Maybe it's better just to bite the bullet, let the spot "ripen", and pop it- messy, but quick!

Maybe I should have just let the viruses do what they needed to do and waved the white flag, instead of waging this futile minor battle- they have pulled back to their trenches, but they are rallying their troops, and it just means a long-drawn out affair!

OD's on his way back after his procedure. Probably with a very bruised googly bag. I'm off to pick him up, but I don't have a rubber ring- or is that only for postnatal mums and post- haemorrhoidectomy.

This whole cancer thing does mean that I can't exactly moan about how crummy I feel and expect sympathy. Another reason to hate cancer!

PS: Sorry about the bizarre post- I haven't even taking any sedating drugs!


Thursday 8 November 2012

The Good Airlines vs The Bad Airlines

OD and I were meant to be flying home tomorrow.
Three days in Singapore, followed by a quick swoop into KL for a meet the parents/rellies, and the 2 days up to Ipoh and Penang. I'd really been looking forward to it.
Of course recent events have put a stop to my holiday planning. I had travel insurance, but OD didn't.

A quick email to the Parkroyal Hotel in Penang, and they refunded our hotel costs of almost £500 with no quibble. It was meant to be a non-refundable deal.

Another email to my very lovely ( blatant advertisment here) travel agent, Amy in Lee's Travel, who contacted Emirates. And the response was...full refund of £1200 , even though it's a non-refundable ticket....goodwill gesture...

And finally, I wrote to AirAsia ( we had booked a Singapore-Malaysia) short haul flight, and on sending them the same documentation, got this response.

Thank you for emailing Air Asia.
With regards to your email, kindly be informed that once your booking is confirmed, it cannot be cancelled and the payment you made is not refundable.

Please be advised that we have received your medical letter however there was no supporting documents attached.
( what sort of supporting documents..do you need a pathology report??!!)
It will be helpful if you are able to furnish us supporting documents to verify the passenger’s relationship with the affected patient for our further consideration.

Perhaps I'm over-reacting, but it seems to me that because OD and I are not married, I can't ask for a refund or AirAsia "credits"- the last time I checked, there wasn't any official paperwork for "committed relationship". I mean seriously, even if two people were nothing more than travel companions ( i.e booked travel together),  ill- health is grounds for claiming on travel insurance!

A very clear example of the Good versus Bad Airlines!


To procreate or not to procreate...

OD's on his way for the chemotherapy preadmission appointment. And tomorrow, he's going to have a "small" procedure. No one can really tell us whether the ox-cap combo chemotherapy is going to fry his little swimmers.

One of the first things I established before our relationship "got serious", was whether he was willing to have more children. The man does have a screw loose on the kids aspect - I guess when you grow up with ten siblings, you must learn to love big families. So, the answer from him was "Yes, I definitely will have more children".

Recently, when we were playing the "look at all the houses we can't afford" game, he showed me one with eight bedrooms.

V: What the heck are you going to do with all those bedrooms?
OD: Fill them with children of course....
V: ( Mental thought: Hmph..who's going to clean up after all those children!!!!)

From the very start,  I have been hugely undecided about wanting to have children. I think I probably do, but the impact that a baby will have on my career plans really freaks me out. And the lie-ins, and the exotic holidays. Oh wait..the inherited four have already stopped the exotic holidays!

The other big issue about having children with a much older man is whether he's going to be up for the 4 am feeds and being knee deep in nappies again. After all, he's been there and done that! And of course, the impact on the kid. Is it fair on a child to have a much older parent? If we had a baby today, by the time he/she was 25, OD would be 77.

Numerous doubts and worries, even before the whole cancer diagnosis. When we talked about him having his swimmers stored , I confessed ( while bawling a little) to be extremely freaked out and undecided about the whole children issue. It seems grossly unfair to bring a child into the limbo of our lives and the unmentioned elephant in the room!

Obviously, my head's not really straight right now, and the enormity of the cancer diagnosis is casting a shadow on everything. I guess it's not really a time to make huge life-changing decisions and in six months time, I may be really glad that he had the foresight to cryogenically preserve some baby making juice.





A reason to procreate- babies are great photographic subjects, especially when they are as cute as this one. But I'm biaised.

Friday 2 November 2012

The Grump Wars

I'm a bit of a newbie at relationships. In fact, my relationship with OD is probably my first, true "adult" relationship. Blame it on the Asian upbringing- I was repressed and had my nose buried in a book.

As far as I can tell, each party has a role to play in the relationship. And when we signed the metaphorical contract, I thought I'd secured the "Grumpy" role. ( "The one with the license to be a sulky cow"). And OD had the "tolerant" role. I even have a t-shirt with a grouchy smurf on it, that says..GROUCHY! Fairly clear, I thought.

And to be fair to him, he has been fairly tolerant of my grumps until recently. I suppose having bowel cancer can make a man much less reasonable. But the role reversal or the adoption of bilateral "grumpy" roles has caused some serious wrangling. Does he not realise that I have the "grumpy" privileges? Women have this hormonal fluctuations after all ( I should know, I'm a gynaecologist!). I was never a great believer in PMS, but by God, it certainly seems to exacerbate things.

The annoying thing is, the triggers for the Grump Wars are never major issues. The problem is the little issues, on a background of tension caused by cancer, teenage stepchildren, and general anger at the world mutate into nasty, vicious tiffs.

In the clear light of day, we can both be more accepting and understanding, but the Grump Wars are going to a feature of impending months. I suppose the purpose of all wars are the attainment of peace at the end. Unfortunately, there's the collateral damage that we both have to deal with.

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 féasta. 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.