Crochet bikini WIP

I have felt a bit at a loss since I finished the fox head.  The lighter and warmer evenings don’t inspire me towards making blankets and I don’t have any birthdays coming up to make presents for.  I am still involved in Amazing Breastforms and have sent out two orders already as an approved volunteer.  You can find out more about how this wonderful cause is giving curves back to women who have lost their breast(s) through breast cancer here but apart from that I have nothing on the go and am a bit itchy for a new project. 

When a friend saw me making a breastform she joked that I should make bikinis and sell them. I don’t  really have any inclination to try to make money over something I enjoy so much, I feel like it would turn it into a chore. But I liked the idea of making a bikini so decided to give it a whirl:

And I love it!  It would make a great summer bra aswell.  I want to play around with different designs and colours.. Here are some of the designs on pinterest that caught my eye:



For anyone wanting to give it a whirl I used a 2.5 needle and schachenmayer catania 100% cotton and did the following:
Ch=chain

Hdc=half double crochet

Sc = single crochet

Ch 18, hdc in 3rd ch from hook then hdc in the next 14 ch. 3 hdc in the next ch then hdc in the next 15 hdc. turn
Ch2, hdc in next 15, 2hdc in next hdc, 3 hdc in next stitch, 2hdc in next stitch then hdc in next 15hdc. Turn 

Ch2, hdc in next 17 stitches, 2hdc in next stitch, 3hdc in next stitch, 2hdc in next stitch then one hdc in each of next 17 stitches. Turn

Continue until you get to 35 stitches plus 2hdc then 3hdc/2hdc/35hdc. 

To do trim around sides:

Chain 3, skip a stitch then 1dc, 1ch, skip stitch all the way around. 

Along the bottom:

Chain 2 skip 2 stitches 1sc in next stitch, repeat to end. 

Go back around trim:

2sc in each space of previous row all the way around. 

The ties are just chains and then one row of single crochet back along. I did about 300 chains for the back tie and 100 for each of the shoulder ties though this was a bit tight so could be a bit longer. 

Now I am having a think about how I want to do the bottoms…

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Post op – one week on

In the days running up to my operation I scoured the web for information about what to expect. All that came up were discussion forums and a lot of negative experiences and I was feeling quite anxious about what was to come. So I thought I would do a quick update for anyone else out there that might be wondering about ostomy reversal. 

All in all the hospital stay wasn’t too unpleasant.  I was thrilled to awake to find I had no catheter and no drains, just a small bandage where my stoma used to be and underneath a small oval scar maybe 2cm x 1cm and no stitches to get removed.  I had to stay in bed the rest of that day but the next day was already encouraged to get up and shower and managed absolutely fine. Because my hand was swollen where the IV was placed they removed it and looked to resite it. When they struggled to find an alternative vein I just told them to leave it out. So from the first day post op I was up and showered and dressed* and was attached to no drips or IVs, needles or cables of any kind, something that always makes me a much happier patient.  

This first day post op was liquid only diet (packet juice for breakfast, small bowl of clear soup for lunch, and again for dinner).  Because I had no IV fluids I was pretty hungry and getting a bit grumpy but my lovely wonderful H snuck me in a thermos of water and tea bags and milk so I kept myself going on cups of tea. I had  some pain across my abdomen but it was easily controlled with regular intervals of paracetamol and ibuprofen.  

Second day post op was purees (less said the better) and that night I had quite a bit of nausea and retched quite a lot which brings us swiftly to:

Third day post op the doctor wanted to keep me on purees another day because of the nausea from the day before. I was really not keen on that and told her pointblank that the purees were probably to blame and that if they put me on them again I would just eat food from home haha.   I got my way and OH. MY. GOD. Talk about be careful what you wish for:

Is it fish? Is it chicken? We will never know because I did not touch it. And the courgettes! Why? WHY?


A side of mystery puree. So much for solids. I ate bread and some potato tortilla and sponge cake my husbands cousin smuggled me in. Carbing it up!

4th day post op I went home.  Woot!

So all well and good but what ostomy patients probably want to know is about the poo situation. Now I do still vaguely remember a time in my life (all of it until a year ago) where I did not feel the need to share such intimate details of my toilet  habits with all and sundry so feel free to stop reading here, no offense taken.  What can I say? A year initiated into the world of bowel disease changes the parameters of what you consider polite conversation. I do still have boundaries,  Poo just is now well inside them. 

Nothing happened the first day. That night I did pass a small amount of liquid stool, a few times. Nothing urgent, painful or of great quantity. I didn’t do a whole lot more than that during my stay but my tummy was making plenty of gurgling noises and I had passed some gas so they were happy it all seemed to be working okay. 

Once I came home the first few days were very light on toilet visits. That increased until lately I am going a lot, passing very small amounts at a time. I was very worried about this because before I was diagnosed I suffered really badly with running to the loo, urgency, constipation/diarrhea/ tenesmus. It was so hideous and I was really scared of being back there. But although I have to go a lot I CAN hold it, I haven’t been worried about not making it in time and haven’t had any accidents which I was warned was a possibility.  Apparently night time incontinence can be a big issue but again that hasn’t happened so far. In fact I am sleeping really well and have only occasionally woken up in the early morning to go but that is a major improvement over waking every night to empty the bag.  I also haven’t had diarrhea at all. Because I am going so often things could get delicate so I use wipes and go easy and so far so good.  It is okay. So far it feels manageable and I am relieved and happy. 

What has surprised me is feeling and looking quite bloated around my abdomen and I gather this can last a while.  I was so excited to wear my jeans and tops and not have the bag bulge to worry about and feel a bit let down to have this big tum now instead. But that is a disgustingly superficial problem, I know, and I am working hard on not caring about it.  The truth is the ileostomy seemed to keep my weight down and one thing that has helped keep my spirits up through all of this is that I have, ironically, looked really well all the way through. And a lot of that was losing a stray few kilos that I never managed to shift after having the kids.   While my insides were falling apart my outside was glowing.   Not all the time. I mean in the post chemo days I looked as hot as anyone can when they have laid in a bed for too many hours tossing and turning and sweating.  Now I am fine. I am ok!  There is nothing wrong with me. And those kilos might come back on but I am healthy inside and when I am feeling stronger I can hit up those hot yoga classes and get back on my long country walks and I may not be skinny but I will be strong.

And the bag? For all it didn’t bother me I don’t miss it either. I thought it would be a bit strange not to have it but it isn’t at all.  

Its all good. 

* I abhor hospital gowns. Cannot STAND them. Most people seem to think they are mandatory but I always get into my own clothes asap and it makes me feel a lot less like an infirm invalid and more like myself ergo; a whole lot better. 

Post op

I don’t know how I feel about this. It all happened so fast.  I wasn’t lying when I said I was comfortable with my ileostomy. After all the trouble and pain and doctor’s visits and treatments and medicine and and and…to be honest everything felt like it was getting back to normal. A new normal, sure, one that many people may not be able to understand, but normal. Going to work, maybe a bit too much, running my boys here there and everywhere.  An adults only trip away this weekend.  A trip to a friend’s wedding in the UK next weekend. On my own!  Normal, fun, stuff.  And then I got a call to say my reversal had been scheduled.  If I refused the date they couldn’t say when the next would be. Be there in 3 days time. Thursday? Like THIS thursday? As in the day after the day after tomorrow thursday?  Ok. 

Shelve normal again. 

Back to hospital and hospital gowns and hospital bracelets. Being poked and prodded and veins that don’t seem to open like they used to. Big blue veins that talk the talk but the needle goes in and then goes nowhere. So they have to try again and again making me cry in pain.  Post op pain meds that took an age to work. Though it wasn’t an age because every hour I opened my eyes and saw only 5 minutes had passed.  So many drugs I felt crossed eyed and the doctors laughed, not unkindly, as I told them how out of it I was even though it wasn’t touching the pain. 

Kids farmed off to friends and family. The tiniest plaster that belies the abdominal pains clenching my gut.  The mark of my flange that still hasn’t faded after 2,5 days.  New little dots and jabs on my belly from injections and tubes.   

The whole time thinking ‘but I am fine now. I am ok as I am.’ Feeling pulled along by everyone else’s revulsion of living with a stoma when MY living with a stoma was the most comfortable I had been around ‘bathroom issues’ for over a year. 

Waiting to see if it will all work like it should. Wondering if everything wasn’t just fine as it was. Not knowing if this new normal will be good or bad. 

An Ode…

Sunlight, bird call, wake me up at crack of dawn

School day, can’t wake, can’t speak only yawn

A short ode to the marvel of sleeping late on school morning Hahaha what an inspired poet! It is a weekly miracle. This ability to wake early, happy and cheery, full of the endless possibilities of weekend followed surely and swiftly by the grumpy monday morning would-be lie-in.  

How different Mondays are since having kids. I adore my children (kids I really do, more than life itself) and love the time we spend together. But BUT. After the intensive family-time weekend I go to work on Monday full of my own endless possibilities of cups of tea in silence. Time to check mails or catch up on errands that were too boring to drag the kids on. A quick coffee with friends and colleagues. Chat that isn’t interrupted a million times to feed, water, wipe, calm, comfort and referee. Time to be me, not mummy. 

 I am sorry for all the times I cursed and dreaded you. Failed to appreciate your own unique beauty. I love you, Monday.

Gluttony


It rained last night. That lovely big, fat, noisy rain that lulls you back to sleep everytime you start to surface.  Because it is warmer now we sleep with the window open so it was especially loud and lovely, pushing cool freshness into our room. 

It is hard to appreciate the rain when you grow up in Scotland, or any other rainy place.  Everyone enjoys rainy days occasionally but when it is the norm, not so much.  When you have no choice but to schlep out with boots on and umbrellas in hand it is a soggy annoyance.  Don’t even start me on drizzle. 

Living where we do, rain is very much an occasional occurance. So much so that we can go months with barely a drop. And when it rains visitors laugh as my kids press their faces up against the glass, or run outside to get wet.   People tend to stay in and avoid it, as it passes relatively quickly, they would rather wait than get unnecessarily wet.    At the first sign of a few drops parks and football grounds clear in minutes, as I drag my feet to call my kids in I am warned by helpful, horrified, friends ‘they will get WET!’ As if the rain will melt them into a puddle like the wicked witch.  At school they are not allowed out to play if it has rained. Not only when it is raining but if the ground is wet from earlier rain.  I can’t help compare this to our short stint in the UK when O was 6, when they played sports in short sleeves. Outside. In November.  My own memories of watching cousins play rugby in pelting rain or snow.  Warm weather makes people somewhat delicate, apparently. 

We had friends over for dinner last night. A very yummy mix of  Butter chicken, onion bhajis, tandoori chicken, rice and poppadoms.  Photos do not do it justice. 


The kids loved it, we loved it and we all ate far too much. Later we played pictionary which was great fun with Y resorting to near hysterical charades to supplement his pictures. It is the first time we have played the adult version with them and it was really good fun in between the inevitable tears “I don’t know how to draw a mooooonkeeeeeyyyyy”.

This morning I decided to tackle the massive bunches of cilantro I bought at the market yesterday. You may live in a city where you can find most ingredients most of the time. I do not live in such a place. Judging by the stock in the nearest shops to me, cilantro is a crazy-exotic herb which is ordered on a possibly biannual basis. I was actually shocked to find it in the market yesterday. At any rate a local shopkeeper urged me to buy lots when I do find it and to freeze it to avoid exactly the kind of runaround I usually find myself in. One exactly like, in fact, the one I was in the middle of and which precipitated said advice. 

So. Two big bunches of cilantro and one Indian meal later I had to face up to my decision and take it in hand


Actually this picture does not do justice to the size of the bunches. They overflowed a carrier bag. Here it looks kind in unremarkable.  Anyway above we have one bunch chopped (in bowl) and one to go. This is a very sanitised version of what really happened.  I didn’t take pictures of the carnage on the counter where I  did the chopping. Cilantro massacre.

Both bunches chopped and some olive oil added I popped it into some ice cube trays and a while later:


Cilantro cubes!


We will see how these work out in practice…

After my thrilling herb filled morning we headed off for the weekly family meal. ‘Only’ 16 of us today.  And as always an absolute glut of food.  We had ‘Tumbet’ which is similar to ratatouille, layers of vegetables first lightly fried in olive oil and then baked in the oven with tomato sauce.  


We can all agree I am no food photographer but then people already look at me weird when I try to take pics of food at a table full of people so you will have to forgive the absence of food styling.  The food is there to be eaten, not photographed!   This meal is a firm mallorquin favourite. I am not big on meals that require hours of hands on prep, no matter how tasty but the communal effort is part of the fun. Whoever is cooking usually turns up about 1130 or 1200 and gets cracking. Then as others arrive; 1230, 1300 they pitch in with whatever needs doing. Its a really smooth operation with everyone kind of milling around, dropping in and out of the action zone, kids playing around and about.  It could be chaos with so many people but after so many years (for me, a lifetime for everyone else) it all just kind of happens in a naturally easy way. 

After THAT I dropped O at a friend’s and took Y to a birthday party. Where there. Was. More. Food. I have felt full to bursting since before lunch even started. And yet food. Food everywhere. At this point I have that post-christmas lunch feeling. Like everything will be okay if I can just lay really still on the sofa with my trousers unbuttoned. Unlikely to happen because NOW we have O back with friend in tow for a sleepover. Cue pizzas and crisps and no doubt later demands for popcorn or ice cream. Not that I have the slightest intention of eating another drop but even being involved in more food prep today is making me feel ill. 

And on top of it all the movie the kids have chosen to watch is Cloudy with a Chance of Meatballs. 

I am off to lie down…

The way things were, the way things are

My Dad was diagnosed with Leukaemia the year I turned eighteen. He was 43. How young that sounds to me now. I don’t know what boggles me more: that by this age he had a 20 year old daughter (my older sister) or that he was so young when life as he knew it ended.
It was a massive event in my life. All of our lives. My tall, big, strong, goofy, cool, Bear of a Dad became very ill, very fast. It was a really scary time and my family did not cope with it well. We, who had always been ‘just us 5′, seemed to fracture under the strain of staying strong for each other. It happened very slowly, over many years, like a crack slowly zig-zagging down a wall, so slowly we barely saw it happening but looking back now it seems to me that that is when we started closing away our feelings from each other. Putting things that were too hard or scary to deal with away in little boxes we could shut tight and push away to dark corners of our minds. I pushed away my parents’ comfort, I resisted their hugs because I was scared of their grief, and mine too; scared that if I let it out it would grow too big and I wouldn’t be able to cram it back in its box again. I didn’t want anyone to feel sorry for me. I wanted to be strong. I wanted it to not be real.
I was spared much of the day to day tedium of illness, being away at university, but it still came crashing in on visits home when I returned to see him thinner and thinner, no hair, brown skin and croaky voiced from the radiation. I still remember vividly the feeling of the cold hard wall behind me as I pushed myself against it, away from him, that strange stranger in the bed who didn´t even sound like my Dad, much less look like him, appalled and terrified by the change in him. It is still painful to think about all these years later.  How painful it must have been to see my reaction.  Writing this, now, makes me wonder if not seeing the day to day was a disadvantage after all.

I don’t know whether the way we changed as a family would have happened anyway as a part of us growing older and moving in our own directions. Whether we would have started to look back on and analyze past events through different eyes if our mother hadn’t grown so angry at our father. If he hadn’t become so passive in the face of her resentment. If they hadn’t drawn us into their arguments over and over and over again. We can never know. I can try and pull it all apart and pinpoint the where and how but what remains is two bare facts.  He got sick and I grew up. And slowly, slowly, everything changed.

Growing up, I adored both of my parents fairly equally.  My Mum because she loved me, took care of me and gave amazing cuddles.  My Dad because he was strong and funny and my hero. I had the happiest and best family out there, I was a really happy child. Even as a teenager I was quite placid; a people pleaser, just as my oldest is now. And there was no one I wanted more to please in this world than my mother. She had a mercurial temper, though I would never have said that then, after all when we are children our parents and their ways are all we know. She liked things just so and although our house was frequently messy it was always clean and there were always chores to do. My Dad´s work took him away a lot and my mum was the linchpin, she kept it all going, she didn’t work so she was always there for us. Always. I adored her. When I was a teenager we would take really long walks with the dog and talk for hours. Even when I went to university I called her several times a day, just to chat.She had her ways but I accepted her wholeheartedly and without judgement. After Dad got sick, it just all got complicated.
The other night I had this crazy vivid dream about my Dad. It stood out because it felt so real, so significant, and I woke up feeling really happy, thinking ‘wow, what a great dream’. I was back in time (as current me) and came across my dad (as he was just before he got sick). I knew it was my dad, and that I was the one out of place. That he was my ‘then’ dad. And in his life he had a teen me. So I ran into him and I said “dad! dad its me (insert his nickname for me)” and he recognised me and accepted the whole situation, as dream people usually do. And I told him all about our lives as they were now and the whole time I was thinking “should I tell him he is going to get sick? Should I? Is it the right thing to do?”

Sidenote: my Dad survived the leukaemia but the treatments left their mark. By 50 he had had heart attacks, a small stroke. By 55 a valve replacement and a pacemaker. A procedure that found us in the lobby of the hospital mutely watching a surgeon indicate with his hands the large, flabby mass that was apparently my father´s heart, telling us it took them a long, hard 45 minutes to bring him back up after surgery.  That he would be lucky to get another 10 years out of it.  I have had more phone calls than I care to recall where I thought someone was calling to say he’d died. Despite it all, he has lived 20 years since that first diagnosis, he gets knocked down time and again but nothing has quite finished him off yet.  Though every episode leaves a new mark, scoring into those that have gone before to make a deeper wound.   The sad thing is that most of those 20 precious years he has genuinely lived thinking he hasn’t long left. Him and me both.  It really messes with your head.

So in this dream I wanted to tell him; You are going to live. A long time still. You will see us all graduate university, start careers, meet the men we will marry. Walk us down the aisle, meet your grandchildren. You will love and be loved for so long still. So live. LIVE. Don’t be scared. Please don’t be scared. You are going to be okay. But, like in real life, all my feelings and thoughts went unsaid, pushing at my lips but ultimately giving in and staying put, safe inside my own head. I didn’t tell him. I just told him he had grandchildren who adored him. I guess I hoped this information contained all the subtext needed to arm him for the coming battle. That he would grow old enough to have grandchildren. That they would love him like I did.  Like I do.

And then I said, as I went to leave: “Daddy, I have been really really sick, but I am going to be okay”. It felt so important to tell him I had just been through something really serious, really hard.  But that I was okay, I had made it through.  I don´t know if I meant this to prepare him for his own journey or so that in the future when he heard my terrible news he would already be armed with the knowlegde that I got through it.  And with that he hugged me.  And I woke up.  I felt so happy, it felt like I had really been with him, and been comforted by him, by my Dad as he was then. The last time I really knew him as the person who could shield and protect me. The strangest thing is that the dream was a positive one. Yet when I told my friend about it later that morning, I started crying. And then later, telling H, mainly to comment how silly it was to have made me cry – I cried AGAIN! And I am not a big crier as a rule. It caught me totally by surprise, that a dream I thought was happy was actually making me feel so emotional when I brought it outside of my head and gave it shape in this world.

I wanted to tell my Dad about my dream because to me it was about how much I love him. How sad I feel about everything that happened. He was dealt a shit hand. Leukaemia is a bitch of a one to get. And treatments 20 years ago are not what they are now. He had a tough, tough time. A lot of time in hospital, repeated infections, time in isolation, bone marrow transplant. And in amongst it all the realisation that he had been knocked off the career ladder at 43.  43!! He did go back to work eventually, after about 10 years, but it was never the same. He watched friends and former colleagues move up and up, taking plum roles that could have been his. Buying bigger houses and taking their wives on expensive exotic holidays. He felt like he had been knocked down in his prime, and he was right. The sadness of it still jars me.

But the more I think about it, the less I feel able to share my dream with him. Because it says so much more than I feel I can share with him about how things changed. The irony is that, growing up, my parents were all about talking. Talking over dinner, over drinks. Talk it out, don’t hold it in, talk talk talk. And since I became an adult I don’t talk to them, not truly, deeply, honestly. I feel like maybe there was so much talking and sharing that by the time I became an adult I needed to pull forceably away in order to make my own private space just for me. Close parts of myself off to them to enable me to break away and be myself, make my own decisions. There is more to it than that, of course there is.  So many things have happened over the years that have changed our relationship, eroded the channels where once communication flowed so easily.  Where did it start? Certainly with Dad getting sick.  Also with me moving country.  A relationship break up that I didn´t want to discuss with them, a lot of little doors being closed off, on both sides.

It really scares me.  Precisely because I adored my parents so much when I was growing up. I love them now, no doubt about it, but as a child and a teenager I truly adored them in that pure hero-worship way kids do. Of course that never lasts, of course our relationship had to change as I grew up and recognised them for the flawed, perfectly normal human beings they were.  But even so.   I could never in a million years have predicted the twists and turns our relationship would take. And it scares me beyond belief that it could happen to me and my boys. Maybe I won’t even see it coming. They will grow and change. And though I will mostly stay the same the way they see me or interpret my actions may change, and I am not entirely sure I can do anything about it. I can try to not make the same mistakes my parents made. But apart from a glaring few I am not sure that they even made mistakes as such. They were just who they were, making decisions based on that, and love for us… what else could they do? What else can I do?  I don’t know where life will take us. What might be lying in store to tilt-shift the memories that I am trying do hard to lovingly lay down for them now.

There is so much I want to tell my kids about my relationship with my parents, one day. Maybe so they can understand them, maybe so they can understand me, themselves, now and in the future when its my turn to be the mental old person. I hope that they will have children because it is one of the greatest truths that until you have your own you cannot conceive of the love your parents had and have for you.  When I had my oldest, I suddenly understood, for the first time, how very much they love me. Despite arguments or fights, petty squabbles and grudges. Moving away, not calling so much, pushing away, pushing back, closing doors and minds, judging and being judged, misunderstanding and being misunderstood. Through and despite it all they love you just as they did when you were a soft little dumpling of a toddler in their arms.

So I doubt I will share my dream with my Dad.  It was special to me, it is special to me. My parents haven´t given me much comfort through my diagnosis or treatment.  They just haven´t.  I imagine it is because they think I don´t want to make a fuss, or because they don´t want to bother me.  Or because they want to let me come to them, like they have for so long now.  The ball is always in my court.  And for the most part I understand.  I do.  But there have been times it has hurt.  Times when I thought; you could call to see how I am. Ask how it is going.  So that dream hug from my Dad meant the world.  It reminded me that he does love me.  I really did get comfort from it, as strange as that seems.  And I guess that is why talking about it makes me cry.  Because it really meant so much.

Our family lived illness one way.  I want to live it differently.  I am a positive person. I have to see the good in things, the beautiful wonder of the world and how lucky we are to be in it.  It is a rare for me not to see the silver lining in any situation.  My Dad, for his own reasons, has lived 20 years thinking he was dying but I am not as scared of dying as I am of losing a whole lifetime to fear.  I am making an active choice to be positive and happy and believe that good things lie ahead. Because I have seen it done differently and I don’t want that.

About the Ileostomy

I haven’t said much, if anything, about my ileostomy and I thought it deserved at least a mention.  When they first told me it would be necessary I was a bit upset, I will admit, because I had no idea what it would involve.  Not crying kind of upset, more like sulky feet stamping ‘oh great something ELSE to deal with’ upset.  Straight away I googled and instagrammed and found hundreds and hundreds of stories of young people (certainly much younger than me) with an ostomy of some sort.  Usually due to Crohn’s or Ulcerative Colitis, sure, but the why isn’t that important. What is, is that they made me feel a whole lot better about the idea. Look at all these fit, beautiful, young things, out about their stoma and shouting their gratitude for what it has given them.  Life. Less, or no, pain. Relief. Freedom. Yes, freedom!  Although I had cancer my symptoms had everyone thinking it was Ulcerative Colitis and if that is really what it is like, it is HORRIBLE.  I felt so awful.  Tired, drained, weak, lethargic.  Running to the toilet constantly. And I mean sometimes maybe 20 times a day.   It was miserable. And so hard to explain. I tried to tell people I didn’t feel well ‘why?’ ‘Well, you see, I have to go to the bathroom A LOT’. (Blank stare).  It was not too hard to come around to the idea that this was going to be a byproduct of a procedure that was literally saving my life.  And like any other treatment so far I accepted it. Arms open wide, come on over, give it to me. Whatever it is, I will deal with it, Just save my life.  Please save my life. 

And it has been fine. I feel lucky. I haven’t suffered badly from damaged skin or leaks. In fact I have only had one or two. And never when it really mattered.  It can be stressful, like learning any new thing can be.  In the first few days I had a few times where I was grappling with applying powder and creams and it wouldn’t stay clean and I had to start again and again. I quickly learned that when this happens just whack the appliance on as quick as you can and go back and redo with all the trimmings when you have both calmed down.  I can imagine that if you are much older and not as flexible, or your eyesight isn’t as good, or your coordination is impaired, or even if you have a bit of a belly and they place it badly, it could be a whole different kettle of fish.  My mum’s friend has a colostomy and she has become so depressed with the issues she has had. So, again, I am lucky. I am young and flexible and (fairly) coordinated and I still have a pretty flat tum. It all helps. And it all makes it not even remotely the worst thing in the world.   It is not ideal. Sure. I HAVE had moments of stressing out about what to wear, feeling unsure and uncomfortable. But I have got through them.  I am learning to dress around it.  My husband has been amazing right from the start and made it clear it was a total non issue to him. My kids have been more… Honest … But they are also more used to it now.  

I have accepted it so much that it now surprises me when faced with other people’s natural reactions.  No one is so insensitive as to say anything overtly rude to my face. But I read stories where cancer patients hope for almost anything except an ileostomy.  Or their overwhelming relief that they don’t have to have one. And despite myself I feel mildly insulted. Thinking; there are much worse things you know. Or a conversation the other day where a friend, who is in the process of possibly being diagnosed with Crohn’s and has a current, painful, leaking fistula. She was upset and her husband, presumably unwittingly, said “come on it could be worse some people have to wear a bag”.  I know it was not aimed at me, I am fairly sure he doesn’t even know I have one, but internally I did flinch.  Arguably a bag is considerably more comfortable and infinitely less painful than an open leaking fistula.  I really felt for her and wanted to reassure her that whatever happens, treatment would be progress. Of course I didn’t. After his comment I felt a bit stumped for words. 

Another friend, a surgery nurse, who was actually present in my surgery, made a face of disgust when I showed her a page of cuddly toys with ostomies, designed to support young kids with the same. I thought it was a great idea, I can see exactly how that could help young children feel better about it. I was surprised she didn’t.  I really got the impression that she thought it was an unfortunate thing that should not be publicised.  Maybe I would have felt like that before, I don’t know. I didn’t really give ostomies any kind of thought before.  I know direct experience changes how we see things, so I try not to judge, or feel offended. But it does surprise me, now, with the experience now logged in actual (wo)man hours under my belt, that it is seen as such an awful thing.  It is not like I wander around constantly dripping poo and smelling bad. People wouldn’t even know I had it if I didn’t tell them. 

And people ask me ALL. THE. TIME. When I am getting it reversed. Answer: maybe soon but I don’t know. I try not to think about it too much. My life is here and now. And I am used to it now. It really ISN’T a big deal.  And I am not just saying that.  There is a high risk of recurrance with my cancer, if it comes back we might have to go through all this again. I don’t know. I am not expecting that to happen but it might. And so I want to be as comfortable as I can be with this situation because who knows, one day it might be permanent. If i go around counting the days until my reversal, I feel like I am joining in the sentiment that it is a bad thing, something to be got rid of. And I don’t want to see it like that. I tell people “I don’t know when, I am in no hurry” and they all say “best it is off before summer though, right?”.   What if it isn’t?  It won’t be the end of the world. 

This morning the hospital called me to give me an appointment for a pre-operative procedure. And my heart kind of jumped at the thought that it could mean my op is soon. Not in a happy way. In a dread kind of way. I feel fine now, and although I want the op I just feel disheartened at going back to hospital and having surgery again. I know it is silly.  I have also read about reversals going wrong, or it taking a while for everything to work normally again.  People might be freaked out by my bag but it is easy and familiar now. Any unpredictable change is just a bit scary. 

So that is my experience of ileostomy. Not everyone will share it. I know it can be a whole lot harder. But there is a lot of support out there, both in real life and online.  I am just glad to have mine because, without a smidge of exaggeration, without it I would be dead.