2011Surgery October Week 1

As I spent 2.5 weeks in hospital following surgery I thought I'd break it down into sections.  I've been home since Thursday and it's now Sunday - the first time I've had time to myself.

Here is week 1

Mon 10th October

As there wasn't a suitable pick up on the dial a ride type bus service I booked a taxi to the hospital.  Admission was 3pm but of course, being in pain sitting in normal upright chairs I had to sit in the day room for a few hours until my bed was ready (waiting for patient to go home - remember this for when it's my time to go home). I was put in a single room, no ensuite, but happy that considering previous bowel surgeries, a private room is the one thing you really want.  It wasn't as nice as when I go to the cancer ward, I didn't know any of the staff, I felt like a number, on a conveyor belt, no eye contact, that sort of thing.

Because I was having surgery and I have controlled drugs, I didn't see the point in self medicating so handed those over (mistake that I forgot my lozenges and only had 2 in my bag which I always try to carry).

Tue 11th October

I was first on the list 9am - Mr A(a) the guest surgeon was coming from Nottingham..  I'd got a cannula in my right hand.  I was hooked up to the usual monitors, cold and hypoglycaemic from having no food since Mon am (despite signs in the day room saying all op patients are to have carb sachets prior to op to avoid this). As before I was sat up and put my feet on a stool, semi naked since my back was bare and struggling not to shiver, my pelvis hurting because I'd not been able to have some of my drugs.  The anaesthetist told me they hoped I'd have a bed in ICU, but if there was no bed they'd have to take the epidural out and manage the pain with other drugs. His name, given my surgery was bloody hilarious but I shouldn't name him here. He said he liked my tattoo (pair of eyes on my back). He injected a local anaesthetic into my spine area then told me I'd feel pushing but to say if it hurt.  It hurt.  He injected more anaesthetic, tried again, and again.  At this point I was feeling dizzy and queasy and getting a bad feeling about the whole thing.  Before I passed out I was put on my side and given o2 for a few minutes before he had another attempt with me lying down.  At this point a second man was assisting for the final attempt and I was laid on my back at last and covered.  As the anaesthetic was fed into my hand and my spine I felt my left leg go numb but pins and needles and my last thought was fear of paralysis in that leg (cheery thought huh).

I woke at 12.30 in recovery in a true world of pain, crying with my knees drawn up rolling my head.  Pain was all I was aware of, everywhere.  I vaguely remember my surgeons coming to see me and telling me all had gone well but I couldn't respond.  They said they'd see me later when I was more comfortable.  The lady taking care of me gave me pethidine by the clock, the minute I was allowed another dose I had it, after 90 minutes of this, still with my knees up trying to reduce the pain in my torso I was just crying quietly.  They sent me back to the ward but I was in so much pain I just didn't move, barely spoke (had o2 mask on anyway).  It was 2pm.

My surgeons and a registrar came to see me and explain again what they had done (as I'd been told before) and that it was very complicated but Mr A had done the surgery and Mr A(a) from Nottingham had held his hand.  I was told I could eat when I was ready so I had a beaker with a spouted lid of packet tomato soup.  At that time, it wasn't all that bad.  I was also offered a vanilla build up shake, which although cow's milk. was cold and the best thing ever right then.

I was on IV fluids so didn't attempt to drink water.  I was in more pain lifting my arm, especially my right. The thought of reaching 6 inches to get my phone was too much.  There was just pain.

Wed 12th Oct

So much pain, I can't remember if I slept. I had two spoonfuls of rice crispies almost lying down.  Nurse came to ask if I wanted a bowl to have a wash, I said I'd need help, being in so much pain and unable to move.  She went off, healthcare H came in and put the bowl somewhere near my feet on the table with some wipes.  She then went and told me to let her know when I'd finished and they'd do what I couldn't manage.  I burst into tears and said "but I can't do it, I can't move, everything hurts".  She got stroppy and said she was told I just needed a bit of help in hard to reach areas.  I said "but I told you I need help, I can't do it".  She was right in my face, finger pointing and spat "Excuse ME but you told me nothing, I was told you can do most of it yourself". She discussed it with the nurse in my earshot and decided it was a misunderstanding.  They came back and H told me "you have to push through 'a bit' of pain before you get better".  I screamed in pain every time they moved me.  The nurse had been off to get more pethidine to help me through. They rolled me onto my side, changing the bed under me at the same time.  I managed to wash "my front" which given I had a catheter, surgery site stuffed full of iodine soaked wadding and had to reach caused more pain. The pain had settled into specific areas - my head, neck, spine, across my lower back (new pain not the usual pelvic pain) and obviously all across my abdomen from the second surgery site.

They tried to sit me up in bed but my head felt like it was splitting, like no migraine I have ever had, and I was in hospital for four days with my first, had to be sedated for several.

My surgeon came to see me, I told him how much pain I was in, about my head that I thought it was a problem with the anaesthetic, he nodded but didn't seem to be concerned.

I ate 2 spoons of whatever lunch was.  I had bloods taken, so not much movement there and then - the pain team came.

Jean was so wonderful, she listened to my list of pain, my history of pain and could see from my face, tell by my exact description what I was going through.  I told her every time they tried to sit me up it hurt so badly in my head, even propped up and lying down was the only way to stop that part. She was so lovely I cried and thanked her for being the first person to listen.  She said pain was a terrible thing and that she would go through all my drugs and come up with a better plan.  Hope at last.

I just lay in pain, not moving any time I was alone, I couldn't think of anything but how much it hurt and that it wasn't right, I should be in ICU with the epidural.

At dinner time I ate lying down, a few mouthfuls then Becky came as I'd started vomiting large amounts into cardboard bowls.  I can't tell you how bad that was, being yanked upright to avoid choking sent pain like a hot rod into my head and down my spine and across my lower back, my stoma site and abdomen felt like I'd been kicked in the wound and every spasm of peristalsis hurt more.  The misery of being sick is bad enough.  I think I just lay there with my eyes shut - the lights hurt my head and my eyes.  It was like having a migraine where the pain stopped in my head when I lay down but I had a stiffness in my neck on the right side.

Thurs 13th Oct

The pain eased a little in that it was concentrated in the areas it was in, just not spreading so far if that makes sense - as the swelling went down I suppose.  I was also back on my other drugs.

Today Sally and a different nurse came to give me a bed bath.  I told them about the previous day and they were both disgusted.  Sally said I should never have been made to have one, especially in so much pain on the day after surgery.  It hurt but they were much gentler and kinder.

I was sick after lunch this time, they insisted on sitting me up at mealtimes.  I insisted it hurt and shrugged down as soon as they'd gone.  Just as a man came to take my bloods, he said "....I'll come back later..."..  He didn't.

L from physio came.  I knew her from when I was at primary/early secondary school and I remember not liking her, but not sure why.  She showed me the breathing exercises I had to do for my lungs.  I told her everything really hurt, but I'd been trying to breathe as deeply as I could.  I had little else I could do.

Maurice, Sue and Charlotte came in the evening and, having kept a little food down at dinner time was feeling a bit better.  Nasty Tea Lady I remembered from previous op who'd just said NO to my request for soya milk.  I was ready for my first cup of tea.  She asked if I wanted a drink in her usual abrupt manner.  I asked if she knew if the soya milk had arrived yet - it had been ordered the day before but wasn't here yet.  She said "Well they won't put it on your table".  Um what? No I assumed they'd put it in the fridge, I was bed bound and didn't know where the fridge was, much less be allowed to go in there.
"Yes I know that, but when the drinks have been round I've asked and up to now it's not arrived"
"Do you want some if there is some?" very pissed off now.
"Erm, yes, that's why I asked" As she stomped off I shouted after her "Do you have a problem with me because you were rude to me last time I was here?".
She came back slamming a glass of soya milk on my tray - as she was walking away I said "Thanks, but I wanted it in tea".  She stomped off and returned with one.

I felt so miserable I wanted to cry, I didn't understand why me having soya milk was such an issue every time.  She was so rude and I was in pain, I was a patient, why did I have to be subjected to this on top of everything.  In front of my visitors and other patients' visitors.

So now I really felt victimised.  Staff hated the fact that I didn't like milk in my tea, kept making me endure more pain by sitting me up, making me sick.  I felt like I really was imposing on them and they didn't want me there.  I didn't want to be there!

Fri 14th Oct

Physio L came again.  Despite all my tears and pleading that it hurt too much that I couldn't tolerate sitting much less standing or walking, that I didn't have pain if I lay down, she insisted on making me walk, sobbing, holding my head with one hand and her arm with the other.  We got to the ward door and I insisted I get back to bed.  She made me sit in the chair while my bed was changed.  The second it was ready I crawled in and the pain started to go.  The pain was now around my stoma, base of my back.  When I lay down after being up at any angle pain spasms went down  my spine and base of my back.  I had funny whooshing noises in my head the longer my head was up, even when lying down.

I slept during the afternoon.  Apparently the pain team had visited again but I was asleep.

Becky came again as I was forcing a few mouthfuls of chicken casserole down (remember I had to give up on my vegan diet because of the trauma of getting a decent meal in this hospital).  My eyes were shut because of the bright lights.  Again I was sick, bowlfuls of the stuff again - usually 200-300ml.  She grabbed the first bowl in time.  The nurse who was on now had thought I was sick because of an antibiotic injection into the cannula so that was changed, then I was sick again as she injected a flush, I was still sitting to stop choking, my head splitting.  After being in spasms of pain down my spine again being upright to be sick, I lay down and the pain stopped in my head, went down my spine and then settled again.  Becky asked "why does she keep being sick when she sits up?" "I don't know" was the reply.

At this point I've kept no food down since Monday 8am, it was now Friday evening and I was back on IV fluids, catheter still in and no explanation why I could only cope lying down. I couldn't read, everything was blurry,  at the end of the day my ears were whooshing even louder, there was so much noise in my head I hated it.  The bed felt like a boat when I shut my eyes at night, I pretended it was a hammock and rocked myself to sleep.

2011 - 20th August - Couldn't Organise A Piss Up In A Brewery...

I had my haircut on Tuesday - managing to arrive half an hour late, because despite putting the right time in my diary I invented my own time :o( Luckily Gary was really good about it and just dampened it and dry cut it.  The fluff is finally gone and it just looks like a very short deliberate cut.  It's much better, albeit shorter, but now I can let it grow in earnest for as long as is possible.

Lisa popped over for a couple of hours on Thursday, her youngest now at school.  I'd not seen her since January.  Unfortunately since she kept her shoes on she ended up running out to move my blue bin 2 yards because they arrived late morning when I thought they'd been - telling her "if you put it out we know you want it emptying" "Yes she would have done but she thought you'd already been." Duh.  Lisa used to be a hairdresser.  Double Duh!  I know she'd have done my hair if I'd asked, but that's not something I can do, anyway I like the idea of going TO a hairdressers even if I did only have 4mm cut off and it took 20 minutes.

Ian came up from Bristol this weekend to visit which was hard only in the respect that I don't yet have my new sofas and chair so had to share a sofa the entire weekend!  Not used to such hardships and the pain is present sitting down these days.  He seemed happy enough to sit around watching TV/reading rather than anything more stimulating but I don't know if he was bored to tears or not...hopefully not. Last time we saw each other was in Kent over a year ago.  He had an invite plus one to a wedding where he only really knew the bride.  After a Facebook appeal and a couple of cancellations I drove down to meet a load of strangers in Kent!  Mental.  They all thought we were a couple despite not actually seeing each other in the last 10 years.

Phoenix came on Saturday night so I got to see him sat at the dining table writing an essay for homework for the first time in years on Sunday afternoon.  Seriously I get and excited giddy warm feeling at things like this.  To those of you who aren't living on borrowed time and were not estranged from your beloved son for 2.5 years due to being ill in the first place I guess it's hard to understand.  He discussed it with me too which made it hard to contain myself and appear cool and casual about it, not wanting to scare him off from ever talking to me about psychology again. Plus he'd been over a couple of hours on Wednesday after college, finishing early. Great timing because he moved the old sofa in from the conservatory to the living room ready for new leather corner suite owners to collect.  New sofas should be here early October.

This week I finally rang the hospital about my surgery - couldn't do it last week.  As expected nobody had confirmed a thing.  I asked Mr A's surgery if she could confirm both surgeons AND a theatre are free on A day in mid October and if so when could I expect to hear in writing about admission dates, times, bowel prep or fasting etc.  She said Mr Aa was free on two days, and she thought Mr A was, but there was no theatre list for that day - I told her no, he was having to add an extra day for me as he planned to do in September.  I then explained that this is actually having a negative effect on my life expectancy.  I cannot and will not have chemotherapy until I am recovered from this surgery.  I cannot have the surgery if I'm on chemo.  By delaying surgery my tumours continue to double every three months and I may not be able to have any further treatment if I leave it too much longer, meaning I'll die sooner.  I didn't see any point in beating about the bush.  I wasn't rude in the slightest or bleating, I just told her how it was to explain why I needed her to check everything and ring me back. She rang back today having spoken to both Messrs A and they are both available and theatre is booked.  She also confirmed that yes, waiting list will write to me to tell me what, when, where etc.  If I don't have a letter in a week I shall be ringing again.

I'm really liking the living room with my new mirror and having got rid of that massive brown leather corner affair.  It feels so much more cosy and bigger.  It won't feel quite as large with two sofas and a chair but cosy I'm sure is here to stay.  

 

2011 August Update

I've managed to get out and about a bit this last month or so.  I managed the drive to Manchester to stay with Faerie and Lady D (fellow patients, or ex patients I should say).  After a few hours chat catching up on things, tea, mushroom risotto and hot soya chocolate before bedtime on Friday night I spent a cosy night in Faerie's bed while she took the spare room.  It's all roses and feather pillows and duvet like my bed but having spent a couple of agonising days with the fistula and stoma being complete bastards (second time in two weeks making me utterly depressed) that same week I took an inco sheet to put on her bed for fear of either leaking again.

Lady D arrived Saturday morning so it was tea, toast then into town.  We had time for a quick whizz around Primark before crossing the road to Debenhams for massages and facials.  We also had after treatment nibbles and bubbles laid on at Faerie's request to get things going.  We got caught by a make up rep offering to do our make up - after we'd had facials and were bare faced, why not?  Having foundation on highlighted a minor excess in facial hair to one of us so she was persuaded to try threading since it was only a fiver we all had it done.  What she didn't mention was that she'd never actually removed the hair above her lip before.  Ever.  So while I was drugged up with Fentanyl, another dosed up on paracetamol (pre wax pain relief from earlier) we were a bit surprised when she cried in pain....obviously we were sympathetic and obviously were not doubled up with our own tears of laughter.  Because friends don't do that.

Singing along to various cheesy tunes we headed back to eat more food and drink a toast to Bec and Peter who are no longer with us.  I couldn't tell you what we talk about, but we never seem to run out of things to say and I still wonder at how well we all get on having only met through having the same type of cancer diagnosis at the same time.

It was a good day to drive back in on Sunday with the top down.


I've finally paid horrendous amounts of money having the lid of my cesspit replaced and brought up to regulations - ie I can now safely drive a car over the concrete.  The amount of money I've spent makes me feel a little ill but nobody would ever buy this house from me, or me executors when I'm gone without it being done so I'm saving everybody a literally crappy job.


I spent a day with Maurice, Sue, Charlotte and her boyfriend Matt who offered to take me sofa shopping.  I'd done a bit of window shopping on my own and with Karys but wanted to hit the big stores.  I was stuck on getting a big round cuddle chair - the one I really liked swivelled.  Despite it sounding like the most boring day ever, nobody seemed bored at all, especially when Sue reclined a chair and her shoe flew across the room.  I ended up ordering two cuddle sofas which will seat two people or one ME and a standard chair because I liked the fabric, different patterned cushions and the colours, plus everyone said they were comfortable.

The kids have been over weekly which always makes me feel better and it's usually at the weekend so it gives me something to expect and look forward to.  They've both done really well in their exam results and Phoenix has started at the college in the town near me and it's nice to know he's nearby somehow.  They were both here this weekend to stay so the house felt full again and as much as I joke about their stuff taking up all the room and them eating all the food I can't think of a better way to spend a weekend than with the two people who mean the most to me.

I was supposed to have surgery this week - tomorrow in fact.  However despite this being booked in three weeks ago, I hadn't had it confirmed so called on Tuesday and was told on Wednesday it wasn't happening as one surgeon couldn't make it from Nottingham.  Yes it's so complex and unusual it's taking two surgeons. My own surgeon called his new registrar in and told him to make sure he was in the theatre for my ops as "you'll never see this again".  See I'm special again.  So it MAY be happening in October but I'm not counting on it.  They seem unable to pick up the phone and talk to each to ask if they are both free on the same day and book a theatre.  Mean while they're playing with my life because I can't have surgery if I'm on chemo.  At some point I need to restart chemo or accelerate my impending death.

Friday I finally got to see the results of the scan I had on 1st August, 5 weeks ago.  As expected, growth in lung tumours and the larger liver tumour looks to be double in size.  As I look so much better - noted by the nurse who saw me pass out last time and my onco who repeatedly saw me looking shit after poison on the ward he suggested I might want to wait a while still and enjoy feeling well since the effects of chemo stop me having any kind of life at all.  I'll see him in a couple of months after which I'll hopefully have had surgery and we can see if I'm having any symptoms yet from the tumours and if I want to go back on treatment.  He suggested maybe I could try the first drug I had, Oxaliplatin (Poxy Oxy) but I insisted if I ever have it again it will have to be a very low dose.  It ruined the nerves in my limbs from elbows and knees down.  Made me unable to walk, need physiotherapy to walk properly again and meant I couldn't touch or drink anything that wasn't warmer than room temperature or it hurt.  Cold weather made my throat close up and my mouth muscles contract, lips go numb and even room temperature drinks felt like swallowing crushed glass.  Still my hair just got thin, it didn't fall out...........and I guess looking back I tolerated that drug better?  I don't know.  He's also sending a sample of my tumour off for K-ras testing.  If the gene shows no mutation I may be able to have Cetuxiab which is another drug to help kill off the cancer and makes any chemo work better.  Side effects - acne like rash, nausea, diarrhoea, flaky sore hands feet and other areas of skin.  Terrific.  Can't wait.  I told him I'll just try and do chemo in the winter, where I spend most my time in hospital using their heating not mine and summers at home.

I've tidied the conservatory, killed 7 giant spiders with a little help from the kids (I did 4), put up a new toilet roll holder, sealed around Karys' bedroom window to stop the wind howling in, sealed up the gap in the conservatory roof to hopefully prevent further leaks and may eventually get round to decorating in there one day!

Tomorrow I'm having my first new hair haircut.  more of a case of shaving a couple of mms off the ends but at least it should look like a style.