Thursday, 9 December 2010

2010 -8th December - Discharged Again

Well against all the odds I've escaped alive.

I had my op on Monday morning and I was very pleased to find he'd not had to open up the old scar, just a brand new rather large swollen mess of a stoma with a plastic "bridge" to stop it falling back into my belly where it belongs.

I've crhistened it Fatty Arbuckle. It's not a nice neat spout like the ileostomy, it's currently a swollen blobby mess which only seems to want to produce watery blood at the moment and nothing else. I've had so many issues with the food or lack of, to the point that I ate breakfast and lunch on Tuesday and no meals after breakfast Wednesday at the hospital. I'm supposed to be eating regularly so things keep moving. Not to mention I am in dire need of protein to heal after surgery, not to mention the ongoing weightloss. I haven't weight this little since i was 17 and on the dole existing on one meal a day through poverty being on a YTS. I still thought things might have started moving by now though.

It was the second time I've had an epidural, the first being my big op to remove the cancer but that was put in whilst I was under anaesthetic. This time I had to sit on the trolley and sit very still whie they put the cannula in my back. I felt him feeling every nobbly bone until he found the right place. I was so cold, it was a relief to feel drowsy and I don't remember much about recovery - except being taken there first to be admitted to theatre and talking to the staff member who was going to be in there passing instruments - she'd had breast cancer. I'm never sure what to say to people when they start that conversation with me, am I supposed to say "I'm so sorry" or feeel better that I'm not alone - except she's working and no sign of disease and I'm having palliative treatment and an emergency op which nobody expected. I assume she isn't incontinent or in constant pain wearing synthetic opioid patches? She was lovely, don't get me wrong, but I know other people have cancer, it doesn't make me feel better about my situation.

They took biopsies from the site of the fistula, but regardless of what they show it wont change a thing. If there is cancer there, or not they won't operate or change my treatment. I will just have chemo and hope it slows things down or shrinks them. That's all I've been offered.

Sarah, one of my stoma nurses came to see me on Tuesday and changed my bag, the skin was so tender around one side of it, the skin well away from the wound that I couldn't bear anyone to touch me there, I had to do the peeling myself but didn't feel strong enough to do the whole thing myself, having only an hour and a half sleep the night after surgery. She came again on Wednesday to watch me change it myself. My abdomen was a bit less tender, but still painful to touch. It was surprisingly easy, even with the bridge which is a rod with a T at each end. That will come out on Monday and the two sutures a couple of days later.

The surgical team came to see me daily (twice since I was only in two days afterwards) and one of the A Team examined me, i.e. had a look at the stoma, and had a feel of the area around it, I winced a lot when he caught the tender part. He said he was sorry, but he had to make me feel like I was in hospital since I was looking far too comfortable and well. (This was said with a smile and I did get his sense of humour - I liked him).

My new surgeon came to see me on Wednesday morning as well, urging me again to make sure I went home as soon as I felt I could cope - he had impressed this upon me and the stoma care team before the op as he seemed very concerned that I might pick up another infection. It may seem too soon, just 2 days post surgery to be alone at home but his concern for my health and recovery time made me feel much safer than being kept in longer to starve and become more malnourished. It wasn't a case of emptying my bed, he had genuine concern in his face and his tone. Besides, I've had 9 months experience with a stoma, it's not like I don't know what I'm doing or have to overcome the initial shock of dealing with having part of my insides hanging out my body for all to see (they don't, people don't like looking at that kind of thing). Right now I'm using the same bags as before but I'm keen to try different, newer ones. Until it gets working properly I won't know if I'll have to have a 2 part or a drainable bag. I don't really mind which to be honest, a two part does make skin care somewhat easier once it's settled in size. (This part is obviously for those who have a stoma and may find this bit interesting). The Apeel spray remover is still a favourite I'm pleased to see and now I have 3 pairs of super sharp curved nail scissors for cutting out (currently cutting to 50mm, ouch!).

All the nurses were nice, not as chatty as 7a, they just seemed to have more time up there, and even sent their love via Sarah who passed the message on. The tea ladies were also alright, apart from one.

"Do you want a drink?"
"Do you have any soya milk?"
"Oh, no thank you then."

Another shift - same conversation except it was "No, I'll call and get you some" - just the same as the lovely lady in 7a who was my favourite. She couldn't understand why the other woman didn't do it, "drinking water all day is just boring!" and the other shift also didn't have any issues, even asked on my last day if I'd like to take the rest home with me. I didn't since it was opened three days by then and due for the bin.

This particular tea lady/food monitor as I liked to call her just seemed to dislike me. How I don't know, I was laid up post surgery minding my own business. Just because I don't drink cow's milk and she was unprepared to allow me to drink anything other than water, why did SHE have a problem?.

One day she shoved a menu card in my face without saying anything, it had been filled in by someone who'd gone home.

"What do I need to do with this?"
"Tell me what you want"
"Oh, I see, I'm vegan, so I don't mind what but a vegan meal please, I imagine you'll have to chase the kitchen, they seem to struggle with vegan meals"

Onto the next two patients in my bay:

"Hello sweetheart, what would you like to eat?" (Sorry WHAT, I get silence and then "tell me what you want" and attitude over soya milk. Because I've had surgery and what I need is to feel more miserable.

Becky witnessed a little of her "treat the vegan like shit on my shoe, bend over backwards to be nice to the others".

Today Fatty started to produce more than just watery blood I'm relieved to see. I had some bleeding leaking under the stick wafer part of the bag so had to do another change this afternoon, I was only upstairs for about 15 minutes and I went to the loo while I was up there. Still shaky sitting upright and trying to get the bag under the bulge of swollen abdomen and the bridge is rather tricky. I remember my first bag change which I undertook in hospital on day 3 by carrying my urine bag, wound drain bag and drip stand with me to the bathroom. I was worn out by the time I'd done that and sat on the toilet for about an hour reading instructions, measuring and cutting out two bags until I thought I'd got the size and shape right. I was in agony afterwards. The nurses were shocked to find I'd done this - "why didn't you ring the bell and ask us to change it?" but I'd never considered asking for help, it was my body, I had to do it home so why not now. I'd not even had a supervised change at this point which I think is why they were so surprised. But that's how I deal with things - head on.

I'm still very tired and sore, my left side is very swollen and tender which I know will go down, after two surgeries on my abdomen I'm fairly au fait with the healing process. I got into a very cold bed, I don't know why my room gets cold so fast after the heating goes off at night - I was under a blanket in the living room and didn't realise it had gone off. I couldn't face taking all my top clothes off and just changed into pyjama bottoms and dived under my feather duvet, head and all until I warmed up. I think I must have been asleep before midnight and the radio woke me briefly at 8, then the district nurse at 9 with a call to say she'd be here in the morning sometime.

Before discharge a caribbean nurse had come to shout at me as if I was the deaf 91 year old in the next bed.

"Have you got a WOUND?" You'll have to imagine the accent, but after a couple of female comedians using the accent I just can't help finding it amusing.

"No, just a stoma"

"So you don't have a WOUND?"

"No. JUST a stoma".

"So you don't have any stitches, just your stoma?"

"Yes, I have a stoma with two sutures which my stoma nurses will deal with, I've already dis....."

"Your stoma nurse is NOT your district nurse or your GP, I have to contact your GP and DISTRICT nurse to tell them what you need when you go HOME".

"Yes, I know that, I see Nikki one of the nurses regularly, I'm just saying that I have seen my stoma nurse today and...."

by christ she was not going to listen to a thing I said. She repeated much of the above about 4 times. At which point I asked if she could stop as we both understood the situation and her repeating things very loudly, making me feel like I was stupid and interrupting everything I tried to say was rude and upsetting. She said I was just the same by not listening to her? That I was acting like I know it all. Well, since I've had at least 8 general anaesthetics, 4 abdominal surgeries and had a stoma for 9 months, knew the stoma care team rather well, yeah I pretty much know how these things work. I've been in hospital a lot. I imagine my frowning trying to understand her accent and why she was shouting might have been misinterpreted, but tough shit, I was in pain anyway.

She said she was ringing the district nurse to tell them to come and see me. I knew it wasn't necessary since I regularly see my district nurse due to my cancer - and I'd spoken to my stoma nurse about having the bridge and sutures out and that I would contact my regular nurse Nikki because we'd missed out on my last appointment due to chemo and her being ill.

Two district nurses arrived this morning. They came to watch me change my bag - to make sure I was coping with it. Since it didn't (at that point) need changing till tomorrow I wondered why they needed to see it - apparently this is why the carribbean nurse had called their boss twice. They'd said their boss found it very difficult to understand what she was saying so I felt better about the miscommunication I had. I apologised for their wasted trip, but they had brought my sick note (I asked when she rang) so it certainly wasn't wasted for me. They hadn't been told I'd had a stoma for 9 months - well if gobby had stopped to take a breath they might have been. They encouraged me to make sure I have plenty of the protein drinks and agreed it was a good idea after my poor nutrition in hospital. I did eat last night but today I've been reluctant due to abdominal pains. I have some lentil and spinach hotpot defrosting but might just settle on wheat free pasta and some delicious red pepper pesto I have, probably some steamed broccoli.

One of the team from Beating Bowel Cancer rang tonight to see how I'm getting on. They have always stayed in touch, I don't know how they keep track of everyone, but I guess there are always a finite number going through a particularly hard time at any given moment as others shift into calmer times. I hadn't realised how upset I was about my whole hospital experience until I repeated it, abridged, to her. It's almost like I'm having post traumatic stress - which really, it is. What's more traumatic than discovering what I did, fearing for your life from internal infection, neutropenia and lack of care, plus downright cruelty from several so called health professionals.

If I'm up to it, I might share some stories from the mad old ladies (patients) with you. As Carole said, they are at least good blogging material, even if they did stop me sleeping, resting and generally make me want to smother them in their sleep!


Tony Songhurst said...

Hi Lisa,

Speechless is what I am, speechless!

Why is it we have to go through these experiences. As if having cancer is not enough we have people that should not be working in the so called caring profession, to 'look after us'.

I have seen nurses use a needle like it is a jack-hammer and ones that could sew silk and not hurt at all.

I am sure you can fight your own battles but what can you do to list the catalogue of errors..can you pass them on to PALS and let them deal with it.

In and around Matlock I am thankful that my treatment, even when I spent seven weeks in Chesterfield Hosp was pretty uneventful as far as care is concerned. Of course there was the time I argued with a doctor that I thought my catheter was blocked and after 4-5 hrs of thinking my kidneys were going to burst it finally was discovered my catheter was blocked...or the relief Thai nurse that tried to give me the wrong drugs and I had to tell her what I should be many patients have to go through hell! Just be thankful though that neither of us are in the Stafford Hospital...

Dinner sounds good...I had pesto, made with rosemary and thyme instead of basil tonight..yum! I also love the little pineapple juice icecubes - they are working a treat when my mouth lining is peeling off, like sunburn on the inside of my gob!

What supplements do you take, is there any that I could send you?

The weather here in Matlock is still bloody cold and I am meant to be taking my Bike test (2nd part) on Monday...I just want to ride my bike even for a short while before my arms get too weak to hold the beast upright :-)

Anyways, better to be at home and yes interesting stuff about the stoma...I had a ventolin sprayer the stoma team gave me to squirt on the sore parts prior to using the bags to help the bloody sore skin heal..I have a spare one from previous if it would help!

Much Love

T xx

Carole said...

Hi Lisa,

I'm glad you're home but at the same time worried that it's too soon yet for you to be fending for yourself...

Catering woman sounds lovely - exactly what you (don't) need when you're feeling pretty crap.

The catering woman on my ward also liked waving menu cards in peoples faces - she did this to a lady on my ward who was blind. Lady says 'Sorry I can't read that I'm blind can you help me choose please?'..
Her very caring reply was 'Blind? Blind? Are you joking with me or what?'.....Sigh....

As for 'wound' nurse all I can say is 'bitch' and probably related to the one that gave me zero time on my first day back on the ward. Some people are just not supposed to enter the nursing profession at all.

Take it easy Lisa and make sure you ask for help if you need it. Now is not the time to muddle through, ask for support and forget the independence thing until you're stronger.

Much luv as always xxxxx

Loopy said...

If it wasn't for the food or infection risk I'd have been better off staying in until a week after surgery. I've been so tired and in pain and lonely. Unable to prepare food let alone face eating anything. Yesterday was a very low point but today I think I'm starting to improve a little. PALS will certainly be hearing from me when I'm up to it!

Anonymous said...


I can't tell you how much I wish we lived closer to you - I'd cook you something yummy (well actually my sister would cook you something yummy because I'm still not allowed to do much) and we'd keep you company....I'm so sad thinking about you being there on your own, in pain and lonely...

Unable to say much more at the moment except if there is ANYTHING at all that I can do for you, please do let me know

From Carole

(Must stop publishing comments on my phone, keep hitting delete instead)

Tony Songhurst said...

Hi Lisa,

Great news, I passed my bike test...yay...will be updating my blog shortly.

How are you doing?

As Carole said, if there is anything I can do let us know...pretty difficult for some things I know when it is probably a face 2 face chat that you need etc. But If I can just send you some stuff / supplements etc then that may help.

Whats the latest, have you noticed any further improvements?


T x

Carole said...


Just a quick 'hello' message really....Hope you're coping there and things are getting even a little easier?

Let us know that you're doing as well as you can be right now.