Thursday 2 December 2010


Arse, arse, arse.

Mr Genius, the surgeon came to see me this morning.

I was fast asleep, with my head under a pillow, so had to snap into Font of Charm and Knowledge mode - something I don't usually manage until I've had at least one cup of tea.

Mr Genius is my hero. He's got the blackest sense of humour I've ever known. He calls me "Bread and Butter" because IBD patients like me keep him in Tuscan holidays. He's twinkly and irreverent and he knows me well by now. More importantly though, he's the most brilliant surgeon.

I don't get lots of inflammation like lots of Crohn's sufferers, rather I get "strictures". They are fibrous narrowings in the bowel that build up over time until they block the bowel completely. The only treatment is to remove them surgically, but Mr Miller is one of the only surgeons in the country to perform surgical stricturoplasty. He slices along the thickened area and peels it back to reveal healthy bowel. Mr Miller has opened no fewer than 27 of these strictures for me. Using this technique, he doesn't have to take the area away completely (resect it) and I can hold on to most of my bowel. Under another surgeon, I would probably be dead and I certainly would not be able to tolerate food orally and would be sustained instead with a permanent, central line, liquid feed, TPN. (Total Parenteral Nutrition.)

He told me I'd need an operation (I could have told him that 3 weeks ago, but they do like to be in charge.) His next list is the 22nd December.

I am the surgery Queen. I always get discharged 5 days after surgery, the very earliest day allowed, but even I can't get home on day 3.

So what do I do? I only came in when I did because Xmas was coming. I calculated that even with an unprecedented level of cock-up, I would be on the mend and back home before Xmas. Silly me. The first rule of NHS is never assume they can't cock-up more.

The medics are talking about sending me home again while I wait, but my family are dead set against the idea. They are already stretched to breaking point and don't want a repeat of last time. My Mum has an 88 year old disabled husband and is already looking after my two children all day, then rushing home to feed my Dad and get him settled for bed. She can't run up and down stairs all day, bringing me cups of tea and medicines and food as well.

We mused over possibly getting me some community support - perhaps a district nurse or social service support. Most importantly, my GP simply has to do more. At the moment he's kind but ineffectual. He does everything I ask but takes no responsibility at all for my care. If I'm going to be this unwell at home, he will have to take a more active role in managing my medications and backing up the team here.

The only other thought I had was to lie to my 6 year old about the date. We could get him a new advent calendar now and say Mummy and Daddy made a mistake about when to start it. Could we really manage to do Xmas on the 29th without him realising? Surely the telly would give it away even if some well-meaning friend or relative didn't?

Oh well, no point worrying about it now, they might think of something clever long before then.


Yep, surgery definitely booked for 22nd December. I literally have the worst luck in the world don't I? That will be 44 days since I was first admitted. 6 weeks and 2 days. The entire process has never taken more than 5 weeks and despite leaving a week's leeway on top of that, I'm still going to be in hospital on Christmas day.

Now it's confirmed, of course, all I'm thinking about is the boys. How on earth do I manage not to ruin Christmas day for them entirely? I'll be barely able to walk, stuck in bed, with tubes everywhere - up my nose, In my vein and up my BLANK. (Fill in your own word for where the catheter will be "up")

The only brainwaves I've had so far are either :

1) Fib about which day is Christmas day. As I've already mentioned, I could get him a new advent calender and say Mummy and Daddy got the start day wrong and pretend Christmas is actually on the 29th

2) Do Christmas early. As I'll be at home til the 21st anyway, we could explain that Santa made a special call and said Giacomo was so special that he would bring his presents early.

3) We all have a whip round and send me private.

As 1 is probably too risky, and 3 is a joke, I suppose we'll have to go for the second option.

Any other suggestions gratefully received.


  1. Hi Sue..What a quandary, it seems to me that the safest option is the op on the 22nd., you must get well, that is the priority...a post Xmas party would be fun, strangely enough we're doing something similar with some relatives arriving from NZ on the 27th. Anyway, you're in good hands by the sound of it, but do give up the fags, if I can, and I did, you, with your strength of character must be able to. <3

  2. Hugs. I get the impression from this post that you know what you have to do already. It sucks though. Hopefully as you're remaining an inpatient a slot will come clear on his list earlier, especially at this time of year as people won't so easily travel in for elective surgery.
    If it comes to it, perhaps Dave & the kids can come to the hospital on xmas day then have a special, just for you xmas when you go home? Two xmas's might take the worst of it away for 6 year old? It's absolutely crap though & I'm so sorry you're facing this situation.

    I got my DLA award today. Still shaking around 3 hours after opening the letter. High rate care & mobility and it's indefinite. I'm very sure that amount of money each month would make life much easier for your entire family. I know the form bit is bloody awful, but you could ask Mr Genius for a supporting letter while you're in? Mine went through without a medical b'cos I provided so much evidence. Now I don't have to appeal it frees me up to help other people apply/appeal so if you'd like to give it a go (and despite all the stress, you should, you're entitled to that money) then I will be able to help write the form. There's another tweeter who specialises in advocacy who is offering free help so between the 2 of us and all that extra knowledge & support on twitter I think we can write your form well enough to hopefully avoid a medical too.

    Thinking of you, sending love, hugs and spoons BG Xx

  3. Sue

    I think that it may well be worse for you than your boys. You and Dave have so much inventiveness that you can easily spin this as 'really great' to have a hospital Xmas and a home Xmas... but it will be hard for you to be stuck in hospital away from your mum and dad, and friends.

    As BG says (I seem to keep saying that) the advantage of being an inpatient is that you are available if a slot materialises earlier.


    Ridiculous, I know but I wanted to cry when I read about your DLA award.
    I'm happy that you don't need to go through the whole appeals/assessment bit anymore, but so sorry that it has been so nerve-racking that you are still shaking 3 hours later, and so angry, that it has been so nerve-racking that you are still shaking 3 hours later!

    Take care Sue and BG

    Syzygy Sue x

  4. Thanks everyone, you're marvellous.

    BG - That's a really kind offer. I know I need to do it, but you're quite right to think I'm putting it off and could do with some help. Let's do it. Dave and I have been struggling financially for ages and i need to sort my life out.

    PS Guys, FORGIVE THE CAPITALS, BUT I JUST POSTED "Hallelujah" AND IT'S PROBABLY MORE IMPORTANT TO ME THAN ANYTHING ELSE. Can you please share it everywhere you can? This could actually be a chance to DO something. Thanks.

  5. The idea of having two christmases is a good one and you could have a separate Advent Calender for each one - twice the fun! We have a tradition in my family of Moveable Feasts which helps when people are unable to manage the official day. And you could tell your six-year old about Russian Orthodox christmas (usually the 7th of January), Poland having Chrismas Eve as the presents and food bit etc., There's a Christmas Worldwide page in wikipedia.

    I do hope that the rest of your stay in hospital goes smoothly. My jaw has been dropping further and further reading your blog!

    All the best to you and yours.

  6. HI Sue, I missed this post having read Hallelujah yestaerday.
    Firstly, thoughh it's late , it is good news you have a date. Having you well and hom eis the best Christmas present for all your family, you are the most important thing of all for your boys.
    You should not lie to your boys about the date, they trust you and you sgould not betray that. But two Christmasses and a Mummy made well and able to come home, they'll be happy about that.
    It sounds as if you have a really good surgeon so you have had to be patient (pun unintended), but it will be worth waiting for his expertise.
    Who knows one day Science may find a Christmas present for you in finding a way to stop these strictures growing. The scientific research these days is incredible and finding solutions for so many conditions and diseases which were alays cobsidred incurable , so maybe one day that will happen to you.
    One thing is evident, you are a marvellous person, writing this blog while you suffer is just one indicator of that. For someone as special as you, adjustment of a diary for celebrating that special day will be an almost insignificant factor for your loved ones.
    They know how lucky they are. Take care, Pam Xx

  7. What a lovely message Pam, thank you.

    I agree with every word you wrote. I AM lucky to have such an amazing surgeon and Christmas can be any day.