Time to Live

I have started and not finished so many blog posts since I last wrote. Upshot is, life has become really busy again. I just about get to the end of my excuses when suddenly I have run out of time and have to go.

last night I watched a documentary on BBC2 called A Time To Live. If you have a vpn you can set to UK you can watch it here

http://www.bbc.co.uk/iplayer/episode/b08r3xyv/a-time-to-live

sorry but faffing about trying to make links and photos look nice from my phone is something that ends up taking up far too much time and pushing me over my allocated blogging time if I am going to have a shot and getting back to this little corner of the web I am going to have to take it back to basics!!

I loved the documentary, it is 12 stories of people living with terminal illness and on the bbc2 site you can watch extended versions of each interview. It gave me so much food for thought and really spoke to that part of me that wants to move on from cancer but also wants to hang on to that glimpse of a better way to appreciate life that I feel I gained when I was living through treatment.  The glimpse I have since worried about losing, know I am losing. I don’t want to just forget what happened and go back to the day to day forgetting to savor the moments or make memories and not just get my house in order but keep it in order.  Because I really sympathize with a lot of the views expressed, that the world can seem a brighter and more beautiful place when you are forced to face up to the fact your life might not be as long as you had hoped. That impulse I had to organize my photos for the kids, make them blankets or other tangible reminders of me.  In the back of the mind of anyone who has gone through cancer is the threat of it coming back. I know it might and while I don’t want that thought to be a negative I can use it to make sure I keep living and enjoying the time I do have, and don’t wait until I am finally given an expiry date.

Watch it, tell me what you think, I would love

to hear your thoughts x

 

Advertisements

Take heart

I keep an eye on various tags related to cancer and there are always new ones popping up on the feed. Other young (ish.  Heavy on the Ish) people like me, mothers and fathers of small children, still reeling from the shock of their diagnosis.   Just starting to navigate the way their life has changed in such a short space of time.  I don’t know if any of them will find my blog or even be in the mood to read past the blathering about how much fun! we are having and how happy! we are.  But I hope maybe at least a few might stumble across it. I mean my writing isn’t great. They may well regret it.  And I DO talk quite a lot about nothing.  My life really isn’t especially interesting to anyone except me. But I was there. In that place.  Not very long ago at all. And it was royally shit. And now I am here. And life is good.  I don’t assume anything about the future but I look forward with optimism and the knowledge that we can get through whatever life has in store. Even when it feels like we can’t, we do.

I read a lot of people feeling angry about being called brave during this time. I think I actually wrote a rant about this at some point. But now, on the other side, and looking back, I do feel I was brave. I am proud of myself for getting through that.  Whether it was stoic and optimistic or weeping and wailing and complaining the whole way is irrelevant. Whether you beat it or it keeps coming back is irrelevant.  Showing courage is being brave. And what is showing courage?  The ability to do something that frightens you. Being brave.  No one chooses this fight, no one wants it. But we fight it as best we can. Sometimes better and with more grace than other times. But we keep going, one foot in front of the other, picking ourselves up after each scan, each test and needlestick, blood samples, MRIs, the indignity of paper knickers and gaping gowns, intimate procedures, radiotherapy, chemotherapy, changes to our body, skin, hair, mood.  It’s the one thing we all win on! You don’t even have to do it happily  to qualify!  You can scream and shout and be furious at the world and suffer the treatments gracelessly and with no humour whatsoever.  You are still facing it, the SCARIEST SHIT EVER.  And you might not feel brave now but I hope one day you can also look back and celebrate your strength in the face of adversity.

That was all I wanted to say, really. I have no idea if this even pops up on anyone else’s feed but if anyone stumbles across it and it serves to buoy them up during this really hideous time, well that’d be great.

 

Wherein I swear A LOT

Back in June last year, after months of visits to the doctor, the emergency room, lost weight,  increasing fatigue and lethargy and the prospect of an undefined number of months on a waiting list for a state funded test, we took control of the issue and paid for a private colonoscopy.  It wasn’t so expensive as these things go, 1000€, but it isn’t an amount of money we just have lying around either, so once my cancer was found I put in a claim to the state to refund the cost.  I never actually thought they would refund the money, I am sure they have lawyers making sure they don’t do anything that could in the slightest way be construed as accepting liability but the way I  see it, I am not suing them for distress or pain or whatever but that is a test they should have paid for and even though they totally let me down they could at least foot the bill.  I actually saved them money and it makes me fucking crazy. 

Fast forward 8 months and I finally get a reply. The gist being ‘it was your choice to go private, you were not in urgent ie life-threatening need so you should have waited’.  

Lets recap. 

Feb 2015 complain of blood in stool and various other IBS (or colon cancer) symptoms. ‘Don’t forget my aunt died of colon cancer in her 50s’

Blah blah repeat visits to doc and ER etc etc fatigue, weight loss until we get to

June 2015 diagnosis stage III colorectal cancer (result of private colonoscopy/biopsy) 

Blah blah chemotherapy, radiotherapy, surgery, ileostomy and Then THEN

February 2016 ONE YEAR after my doctor filed a request for a colonoscopy ‘priority: NORMAL’ because there is allegedly NO ‘URGENT’ category for colonoscopies (!) while I was receiving my first post surgery dose of chemo, I was called to be offered, not an appointment for a colonoscopy but an appointment with a digestive specialist. 

Is it me? IS IT ME? what part of 7 CM stage III COLORECTAL CANCER (with nodes affected) is not urgent?  What would it have been if I had left it another 8,9,10 months?  What if I couldn’t have paid for the test? What about all the other people that can’t?  How fucking dare they? Tell me it was okay that I had to pay for it myself and not even have the grace to refund me my money but on top of it all tell me my situation wasn’t urgent?!

I am so mad. 

I am SO MAD. 

I don’t care about the fucking money. If they had said we are legally bound to only meet x percent of costs or pay 50€ or whatever it would have been better than telling me what happened to me wasn’t important. Because that is what it feels like. 

I can appeal.  My initial reaction is to keep annoying them,  be a little thorn in their side, so I will ask my doctors to write letters detailing my case. But I know it doesn’t matter. I know they can’t say it was more urgent. I wasn’t dying at that moment. Yet. I was. I was dying.  If it hadn’t been found I might have died. But that doesn’t count. 

On the one I want to highlight the issue, fight for myself and others who can’t fight for themselves or need help even before they know they need it. Like so many of the warrior campaigners on here and in the wider blogosphere. Shout on facebook, contact newspapers. Tell  them people are dying because doctors can’t request urgent testing. 

And the other part just wants it to all go away. I don’t want to fight. I want to live my life. My real life. My nothing to do with cancer life. I don’t want to be consumes with sadness and anger and bitterness which is what I feel when I read letters that tell me what happened wasn’t life threatening. Cos my life felt pretty fucking threatened when I barely had the energy to move from sofa to bed to sofa to bed. When I couldn’t pick up my 5 year old. When I couldn’t handle being around the energetic afterschool chatter of my kids. When I could only drink water lukewarm or my face twitched and spasmed in the cold because of the side effects of the chemo.  

I feel like I should shout and scream and point at them and tell everyone I can but I also don’t. It makes me feel impotent, weak, unimportant. Like what I went through didn’t matter. But it mattered to me, to those I love and who love me. It mattered a LOT. 

Post surgery update: 1 month on

Current mood: bummed

So I was going to write this last week as I hit the 4 week post surgery mark and if I had you would have seen the wound healing well.  Well I didn’t and a few hours after seeing my surgeon for my check up it started looking red: 

(Bruising on the right from injections which have thankfully now finished)

Wound still looking a bit scabby but not too much and you can see it looking a wee bit red. How crazy that I STILL have the flange mark?!  I totally did not expect that to linger so long but it is fading, just really slowly.  Now it looks like this:


Owwwww! And it hurts! The problem is coming from a couple of stitches that haven’t dissolved, I can see them. My neighbour and friend is a nurse so yesterday I asked her to try and pull them out and she did but there is obviously still a knot because they wouldn’t come. They did however break a bit so now I can’t see them. 

I have been given antibiotics and the GP told me to wait til they reappear and then go to the hospital to have them removed. Seems a bit silly to wait seeing as I KNOW they are right there. Why wait for them to flare up again down the road just get them out!! Totally bummed that what was shaping up to be a small and tidy scar might be affected if they have to dig around for those fiddly bits of stitches. 

Bummed. And annoyed. 

Summer is here..

Its been a busy couple of weeks. Summer is almost on us. We changed to our light spring duvet this week and we are moulting layers of clothes  like crazy.  At this time of year our house and garden really earns its keep. In winter we barely venture onto the patio, the winter sun hardly limping above the buildings opposite for long enough to warm even a small corner of it. So it spends the winter months abandoned in damp shadows.  But now. Now the mid morning sun creeps across the table outside and we eat more days out than in.  The kids can be obliged to sit and ‘relax’ for about half an hour after lunch before their ears prick with the sound of neighbouring kids outside and they rush out the door, their shouts of pleasecanweswimmumpleasepleasethankyou trailing behind them.  On these days it feels like picture perfect family life.   Less of the endless tidying and laundry and other chores, rushing between activities and refereeing fights and more pottering around doing my thing, them outside doing their own thing.  Long afternoons laying on the grass watching them jump in the pool again and again ‘mum watch this one’ ‘mummy mummy watch me, watch me’ and timing races around the water’s edge.   This blissful co-existence, so far from the intense dependancy of the baby years, as beautiful as those years also are, is absolutely my happy place in this parenting journey. 

 I have been taking it easy since the surgery but have had a few good reasons to leave the house as extra-curricular activities start wrapping up and have their end of year celebrations.  Last week we had a father-son football match.  The boys usually play 4 x 10 minute quarters in their league matches but they played 2 x 35 minute halves in this one and I am not sure who was more wrung out at the end, dads or kids!  For the record, the boys won but the Dads took it surprisingly seriously and gave them a good run for their money. 

Then there has been end of course meals and get togethers all the usual events that usher in the end of the school year.  15 days of school left. I always feel excited about school ending for the summer.  It reminds me of being a kid – the promise of sun and sea and fun stretching out before me like an infinite world of possibilities, september a vague notion like promises of ‘when you are older’.  I am excited for summer. I will be complaining about the heat and bored children in no time, like everyone else, but it has been a long, rubbish year, and I was so weak and unwell last summer that I can’t wait to run into the surf with my boys, spend afternoons helping them clambour onto bodyboards or over rocks, afternoon ‘quiet times’ of crafts that create more mess (and stress?) than works of art. 

To which end: today’s outing – first beach day woooo!


In ostomy reversal recovery news the bullethole is slowly healing and everything is going really well. Looks like the flange really stained my skin though as I really would have thought the mark it left would have faded by now (2 weeks later):


Shame they couldn’t site the ostomy just a couple of inches lower and save me laser removal on the little tat I got when I was 18  but I kind of like these two marks, twenty years apart,  right next to each other. The tattoo is small and cheesy but it has always reminded me of who and where I was when I got it and my scar will do the same.   Lets hear it for strong bodies with marks that tell tales of loves lost and battles won!

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.