Saturday, 26 November 2011

2011 - 26th November Last Christmas...

Again I've bought the kids presents a month early and because they're electronic items which must be tested they've had them early. It's also because I never know how I'll be on a given day especially now. Besides one is a phone, they're in their late teens and they'll get presents from others too. We'll still be glued to our gadgets on the day anyway and I get an extra month of seeing them with shiny toys that I can only afford having cashed in most of my pensions.

Other people probably go on spending sprees, holidays.I don't know. Me, I've been living pretty frugally and trying to pay as much of my mortgage of as possible, looking at cheaper houses so I can be mortgage free. Treating my children to bike riding and car driving lessons plus a bike and car taxed and insured for a year is making me much happier than taking off on a holiday. My son's face when he first came to see me without the bus journey and 2 mile walk from the bus stop, my daughter's excited email about her first driving experience, all things I wanted to see. Who knows how old they'd be before they could afford it themselves? I was 32 and still put it on credit. I want to do so much more for them myself but soon enough they'll have the huge responsibility of their inheritance and have to decide how to spend it. I can only advise them now and hope they don't waste it or let it ruin them.

On the subject of time, my oncologist told me and my son this is most probably my last christmas. My youngest child held my hand while I cried. He's still 16, took the news calmly. Dr Tom apologised if it was a bit harsh. He's never talked like this before. He suggested I take a break from the poison back in May because it was making my life awful, giving me more problems, no relief from pain. I had no symptoms from which it could give me relief from. In September we discussed possibly returning to my original regime but a low dose and/or Cetuximab for which he had some of my tumour sent away to be tested for my K-ras status. When I saw him last week he said he doesn't want to put me on the same drugs again. Quality of life is his priority for me now. My CEA is romping away, now over 600 but apart from being weak, plagued by new or worsening pain and a persistent non-productive cough, I'm still better than when on chemo. I've had 3 lines in my arms for up to 7 months and I have a stoma plus pain patches. I'm sick of only being able to get parts of me wet in the shower. He suggested tablet form of 5fu which I've been terrified of since a friend's dad died in that hospital as I had my first major surgery - I was told because he was on tablet form chemo which had such a strong adverse reaction in him, had he been on IV they would have stopped the transfusion. Dr Tom told me they are not the easy option, they can still kill patients from side effects, they're just more convenient. I know this already but have tolerated the IV version so I'll take the chance - I'm not trying to save my life any more. I'm having a scan next week to see if there are any imminent threats to me for the next month or so. He wants me to have a good Christmas with my family (me and the kids then).

I told my daughter the next day, sat in the car waiting for her bus home. I had no intention of letting her on the bus but had been unable to tell her all day. She's planning on going to Uni next year and to move in with me, to "look after" me in July. I know she must have thought I'd be around for another few years and to have to crush her plans whilst telling her she won't have me either is the hardest thing I've had to do in a long time. I bawled an apology, she sobbed it's not my fault. I'm sorry I have to leave her and her brother so soon. We email sometimes several times a day, its easier than talking sometimes. I'll never be ready to leave them no matter how much pain I'm in. I hope she still goes to uni, can move in with her boyfriend of a few years when the time comes.He'll look after her. But my son? I hope his dad keeps looking out for him, it'll never be what we have. I'm the only one, maybe girlfriend excepted, who he'll lean on snuggled up in a blanket (all 6'3" of him) and let me stroke his hair like I did when he was little. He still gets me to cut his nails, a weekly event as children. I'm so incredibly happy he was finally able to let go of what kept us apart almost 3 years (it seemed he struggled with me being very ill again all of a sudden after my reversal when he thought I was all fixed) but he' still my baby. He stays all weekend, visits during the week. They really make me feel so much better just by being in the room. I think a small part of this great universe is a better place for me bringing these lovely people into it.

Thursday, 24 November 2011

Please Support Chemo Patients

Macmillan are putting their weight behind efforts to stop DWP make cancer patients undergoing chemo attend work related interviews. You all know how badly I tolerate the poison and this is cruelty beyond words. Just trying to fit an appointment in would be tricky, one week as an inpatient, in for flush next week and another appointment for a blood test. If someone took me I'd like to think I'd throw up or my bag would need changing, just to liven things up.

It would be nice to add to the 3500 signatures so far.

Friday, 18 November 2011

2011 20th November - Mini Post

I've spent a few days with Hayley, which seemed like a few hours but redone my will, found a burial site and pushed myself a bit more.

My first will was signed the day before admission to hospital for my major op to remove three tumours, my rectum etc etc. My children were 12 & 14 and I put everything in trust until they were 21. Now they're nearly 17 & 19 and I've been able to talk to them about what I think is best to with the house, money, I know what sort of adults they are turning into. I've changed the executors, since the original 3 have all remarried and moved some changes were necessary anyway!

It's a big relief to make my burial wishes clear - I only want my younger sister and children plus a few proper friends to have the opportunity to speak at my service - a civil one with a celebrant - those few people who I think know me best and have earned the right. This may seem harsh but having had a distant estranged relationship with both natural parents, one of whom I just managed to outlive, they don't know me, my feelings, my life. I don't want anyone weeping and wailing, being over dramatic. The service is for my children and those very few people who have stuck by me and been a real help these last few years, or who were there for me in the past though we may have grown apart, still care. If I'm arranging it and paying for it (upfront or from my estate) I bloody well expect my wishes to be upheld!

The site is a calm, serene, picturesque place with nothing but fields, trees and wild flowers visible till you spot the ground plaques. I'm sorry to the man whose bench I collapsed on and threw up next to when we arrived - effects of dural puncture take longer to kick in and are milder but still apparent.

I needed this few days with Hayley.for lots of reasons. I think she needed them for different ones. I'm glad she gave up precious time with her babies, I know more than most how precious they are.

Friday, 11 November 2011

2011 11th November - 1 Month Post Ops

I'm awake because I kept dozing off in front of tv on one of my new comfy sofas. This in itself is a novelty. Last Friday I had to sort out my remortgage as my fixed rate is ending soon. Whilst in town I went into a couple of shops and bought a few essentials from Boots and something new to wear, nothing special but it felt "normal". I was only able to do this because I had my "pimp" stick. By the time I'd got back to the car, after a stop off for iced tea in Nero (where the barista saw my stick, invited me to sit down and served me in turn at my table), I was worn out. Not surprising really, being my first real attempt at walking in 3.5 weeks. It was that good tired though, from having achieved something.

One thing that worried me greatly when I was driving was my vision - I still couldn't see properly. I couldn't see what I was signing in the building society, or the read receipts from shops. Everything was still blurry, like the tv, even with my glasses on. I made an appointment for Monday with VisionExpress so I could get new glasses ASAP.

Friday night my son brought one of his best friends in for coffee before going out, to return "later" to stay. This is the first friend he's brought home since he was little when they were delivered by parents. He came in first to check it was Ok. He may have worried I'd be in my PJs but luckily I was dressed and wearing makeup looking quite presentable. I was secretly really pleased, not just that he wasn't embarrassed by me but that he was considerate enough to come in alone first to check.

Deb arrived on Saturday and I was feeling a bit rough after the walking. Copious amounts of YT were on tap as ever, as was food and fireworks when Karys arrived! I sat on a chair pointing with my pimpstick, wrapped in a blanket. My back was really starting to hurt the more the day went on and I realised I'd overdone it big time the day before. If Deb hadn't been there I don't know what I'd have done, I had to sit still to try and rest, relax and not hurt anything else by over compensating. It's a good job we both like the same TV on Saturday nights and Internet sofa clothes shopping to keep us busy. I was caught out by odd spasms and cried out loud a few times. I was worried if slipped a disc but my district nurse wasn't too worried when I saw her the day before my adventure back out into the world. It was the same pain I had in hospital but getting worse. By Monday I was crying unable to move, answer the phone or sob pathetically the way I wanted to. Tuesday seemed a little better and Maurice said he and Sue would come over. I had a shower mid morning, sitting on the bath seat. The whole task of washing, drying and dressing slowly was utterly draining ss it always is after surgery or chemo but i also got 4 hours of extra pain for my trouble :-( When Maurice checked to see if there was anything i needed I asked if they could bring some ibuprofen. Having tried to do pose of a child (yoga pose) on my bed after my shower, I was now convinced I had damaged muscles and/or ligaments with all the violent vomiting, rushing to sitting from lying to prevent choking.

Within an hour I noticed a difference. At last the right relief, despite the other strong painkillers I'm on, anti inflammatories were what I needed.

Also that morning I realised my vision was back! I could read words on the screen clearly with my glasses.

My hearing is almost back to normal. Sometimes I have to put my head down to make sound come back to my right ear instantly. I get earache in my left if I lean on that side too much which travels across my jawline. If my head starts to feel a bit groggy in the evening I just lie on the sofa.

It's going to take longer for my back pain to be sorted, but I hope it will. A whole month of extra debilitating symptoms just from a slip of a needle for an epidural I never enjoyed the benefit of. (I know it's untrue, but) that could only happen to me couldn't it!

Forgive any typos please it's nearly 5am x

Friday, 4 November 2011

2011 Surgery October - Caring Profession?

I didn't dwell too much on the more negative aspects of my care during my 2.5 week stay in Pilgrim Hospital, however it was impossible to exclude how my PDPH symptoms were ignored and my initial pain also ignored. There were other instances where I and others in the ward questioned why on earth some of the staff were working in a caring profession. There were some lovely healthcare assistants, some lovely nurses, some friendly catering staff. The ones you remember when you are in pain, unwell, undiagnosed and feeling uncared for are the bad ones. This does not help the hospital's reputation which was again called into question on the news yesterday. One healthcare, male, didn't speak. He would prod patients to wake them at 2 and 6am and just expect them to raise an arm for BP, a finger for 02, turn their head for temperature. He didn't speak. The hourly checks where they write down how the patient is, some asked "are you OK, are you in any pain, is there anything you need?". He asked nothing. He took blood pressure from a cannulated arm enough times to push the cannula out. He left a full, stinking commode for an hour in a room with 2 patients who had open abscess wounds and myself, post surgical. He would have left it all night until, when he turned the lights off I called him and pointed out that surely it wasn't healthy to leave bacteria circulating our room with open wounds, let alone the smell. He didn't respond verbally, just took it away. When my young neighbour was sick on the bed, he changed her sheets twice wordlessly, offering no comfort. When curtains are drawn, you can't just go poking your nose in, but I desperately wanted to go and hug her or hold her hand while the nausea passed. If I hadn't been quick with a bowl she'd have been sat in it for several minutes. Then there was Hattie. That's her real name. She was nothing short of miserable most of the time. She was totally dismissive of my symptoms and when I told her I thought I had an answer she was sarcastic. As if to say "Leave diagnosis to the professionals". Look where that got me. One night, when my pain patch was due, I'd requested a lozenge for breakthrough pain - having been told by the pain team she'd asked them to change it from a timed dose to when I needed it (ie, when it hurt, since breakthrough pain doesn't come on bloody time). This was at 8.30 she said she'd come back with my patch. I told her I was in a lot of pain and it had run out when I got the lozenge (she insists on calling them lozengers and previously watched while I opened one to see what I did with it. It's a lozenge - is that not self explanatory?) At 10.30 I couldn't take it any more (didn't realise it was so long), and pressed the bell again. I was crying in pain by the time she arrived 10 minutes later. She was moody already. In tears I said "You told me you'd be back with this two hours ago" "Yes I said I'd be back...we had handover" was her only reply. I was too stunned to point out handover is 15 minutes not two hours and still wasn't a valid excuse to leave someone on such high doses of pain relief in pain. It takes up to 12 hours to catch up when late with a patch. I told her I'd need another lozenge now since she'd been so late. i was told I couldn't have one for four hours because they were every 6 hours. I was crying through pain and anger at this point and told her that is NOT how they were prescribed by my GP nor by the pain team. The best they could offer was getting a Dr in theatre to change it to 3-6 hours after he'd finished - this was at 12.30am. Idiots. I told her it was not acceptable that not only was I dying, suffering extra pain due to the hospital (anaesthetic error) and now this - I'd never been in so much pain as on this ward. She carried on writing, having not made eye contact at all, and said "Sorry about that" and walked off. The next time she was on, doing drugs rounds she administered to the other 3 patients, but another nurse came in to do mine - I wasn't last in the natural circuit. Carla and I exchanged looks, was she really refusing to do my drugs? I've already mentioned the healthcare who made me have a bed bath after trying to make me do it myself, despite the fact that I am well within my rights to refuse. She did eventually offer some sort of apology by saying "I'm sorry we got off on the wrong foot" after changing her attitude and asking me each time if there was anything I needed from my locker where I couldn't reach or if there was anything else she could get me - realising now the extent of my pain and situation. I accepted that by saying I was literally in a world of pain and barely able to communicate and she said she hadn't realised how much. Then there was nasty tea lady who also changed her tune after I was angered enough to point out her rudeness. There is, I'm happy to say a long list of nurses and healthcare staff who were either pleasant or exceptionally caring and so I don't forget for when I get around to writing to the hospital here they are: Katie, Fliss, Ruth, Annie, Sally, Holly, Rick and Michelle. There are a couple of others whose faces I can picture but I never caught their names. Annie in particular stood out to me, she genuinely asked if we were all right and was always pleasant, changed my bed quickly because she knew I couldn't sit out for long. Rick was always up for a bit of banter, such a contrast to his other male colleague. I'm pleased to say all the Doctors who visited me or cared for me were pleasant and professional. Especially M-C who took my history, she even referred to me in my discharge letter as "this delightful lady" which is probably the nicest thing I've seen in my medical records. She was concerned that I should start chemo again as soon as possible due to my increasing count, if that was the plan, even offered to my oncologist to move things along faster. I told her I just needed the time to recover, having been through so much more than expected. I see him in 2 weeks. Potentially to start the poison in 2.5. The 2 anaesthetists who came to see me a few times were very polite, obviously, and apologised that this had happened. I was more than disappointed to hear that one had spoken to Mr Butt (seriously, I would get him wouldn't I?) regarding the blood patch and decided not to risk further damage. Yet he never came to see me personally to apologise. At no point did I consider complaining, I have no idea if I'd have grounds to sue, given it delayed my recovery further. It's not something I'd do - it is a known risk (0.5-1% chance), not one that was explained to me beforehand however, and in the end was totally pointless since no beds were available in ICU. I think that's unprofessional, which is why I've named him, also because I couldn't keep the joke of his name to myself. The physios, as always, lived up to their reputation. They did leave me alone for a few days after 2 days of making me feel shit walking until the hearing problems and headache improved. When they were on shift the ward was a happy place in my last week also because of patients Coral, Carla and L, the youngest.

Tuesday, 1 November 2011

2011 Surgery October Week 3

At some point in the second week, a nurse had to come and remove the iodine soaked wadding in my (we're going to call it my fanjo because it's just nicer OK?) fanjo.  So there I am, knees apart on my side while she pulls the end of the bandage material, and pulls....and I wince and cry out at the soreness sometimes when I imagine it's catching on the stitches inside.  Every time she'd say "just a little bit more, nearly there, you're doing really well" and I'd carry on taking slow, deep breaths, she kept on pulling...I got an image in my head of her with her white gloves pulling a string of bunting or knotted handkerchiefs like a magician.  I managed not to laugh because of the discomfort.

I also spoke to Occupational Therapy and agreed to a bath board/seat, a perch stool for the kitchen and medic alert - a bracelet with an alarm button to dial through, talk to switchboard who would either dispatch someone or contact my named people to gain access.  It also sends out the fire brigade if my special smoke alarms are set off (yet to be fitted, but I'm hoping for some nice young fireman, I get so little pleasure in this life now, I deserve something pretty to look at).

I haven't explained my surgery in much detail.  I had a loop transverse colostomy last December which kept retracting inside me and joining up allowing waste to pass through the normal route to my j-pouch which replaced my diseased rectum back in 2006.  Where the join of bowel tissue to the rectal stump was a hole developed.  Bizarrely, instead of leaking waste into my abdominal cavity, it grew a tunnel to my fanjo (no sniggering Withers and Puxty) and then a hole through that so waste could escape.  Every time this happened I had contraction like pains low down as it was forced through this 4mm hole which I had no control over - and would have to wear a nappy for.  I don't need to point out how risky this is with regard to all sorts of infections.  I had sore skin when it was bad, the top layers were stripped off and bleeding raw, again I had to go to the toilet hourly to keep it clean and prevent infection, unable to walk when I had a contraction.

The solution was agreed as a belt and braces approach, at my request.  The stoma was converted to an end stoma so there was no way anything could get out any other way other than the stoma.  The second operation was very complicated and so rare one of the registrars told me how privileged he was to see it as it's one he would only normally read about in text books.  The thought of all these consultants and doctors peering at my bits was a little off putting, but I'm used to it now.

It took all morning to sew up the fistula from my vaginal canal and then take a slice of tissue like a skin graft and place it over the fistula like a patch.  It took so long because obviously he was working with long instruments in a very narrow space.  He injected a lot of local anaesthetic in there so I actually never felt any pain ever in that site.  The pain was anywhere but.  Except when the wadding was removed.

So, back to my stay:
Another weekend in hospital, my son visited on the Saturday for a little over the 2 hours, but nobody noticed.  I ordered him a new helmet, since his was several years old and had been dropped so unsafe.  He was really looking forward to it arriving - it being half term he would be able to wait in for it.

Mon 24th Oct

My favourite stoma nurse came to put glycerin suppositories in my stoma, which involved putting a gloved finger inside my intestine and having a bit of a rummage to feel the blockage which was pretty hard.  One came out straight away but she stood there like the dutch boy and the dam holding her finger in until it looked like it would stay. Carla went home so she could be with her babies, still in as much pain as when she came in, still with no answer and I really felt for her knowing how I felt when I was trying to get someone to listen.  She is sure it's a gall bladder problem, a relative has died from it.  Naturally she is terrified and wants to be well and look after her children.  Her and Coral made my stay almost pleasurable while they were in and I've been in touch with both since I left.

In her place I couldn't help noticing a young woman with a Colostomy box, she was probably getting here first stoma.  After a while I quietly mentioned I was on my third stoma and if she wanted to talk or ask any questions I'd be happy to help.  We did have a chat and a  few tears and a hug about the fears any woman has about her body and potential rejection especially at her age.  I'm glad I was able to assure her that even I, in my late thirties recovering from cancer had managed to have a physical relationship with my stoma and it was never an issue. In fact, I told her, it would help sort the wheat from the chaff because it would quickly put off the idiots she shouldn't be with and the decent ones wouldn't care, they would see how courageous she was for what she'd been through and how strong she was, that yes, she should be very proud of herself.  Her stoma was a day older than mine but had an abscess which had to be cut out in theatre.

Tue 25th Oct

Jane drove over from Derbyshire for a 2 hour visit with my mum and her husband then had to drive back in a wicked storm - I was enjoying it from my bed but Jane wasn't enjoying it from her car....

My new roomy was sick, from the anaesthetic and the healthcare on was an uncommunicative ignorant waste of space who 3 times took her BP from the cannulated arm which led to her IV fluid leaking all over her bed as it pushed the line out.  Making her even more dehydrated.  I heard her and rushed (as fast as a tortoise given my situation, hobbling round the bed, to give her my spare bowl.  It was on her sheets, then later the blanket and her bedding had to be changed twice.  I felt so sorry for her, just a couple of years older than my daughter.  We talked about things when she wanted to.

Wed 26 Oct

I really thought I was going home today.  Phoenix was up early and to my house in time to wait for his helmet, mum had driven over to wait in for my OT equipment.  I rang Phoenix after it arrived and he was practically jumping around shouting "it's awesome".  He likes it.

Stoma nurse came with more suppositories and a lubed, gloved finger.  It was shrinking but Dr felt I should wait another day.  I said I was getting to the point where I wanted to stick tweezers in there and get it out myself.  He said they could try forceps but it could be very painful.  They'd decided against putting a tube in and doing an enema since the suppositories were the most gentle way and were working slowly.

Thu 27th Oct

Today Dr Al rummaged around a lot inside and madc me feel quite ill and my insides ached for a few hours.  He was trying to shift what was left of the blockage.  He put some more suppositories in and said I could go home.  I really wanted to sleep but was told my bed was needed at 1pm.  Now when I came in at 3, I had to wait hours before my bed was free and I was in pain at the time.  So again, I would have to sit in even more pain in an upright chair for hours.  Mum and Karys were coming at 2 then I'd have to wait for my discharge letter and drugs.  After I took my bags to the day room, I went back to say goodbye to the Old lady I nicknamed Jacko because she kept putting a sheet over her head.  I asked her not to give up, told her I had a stoma too (she told me she'd had one, which I'd worked out) and held her hand, begged her to try eating more food.  I have a feeling she's made her decision.  Her husband died a few months ago and the surgery has knocked her down, made her depressed.  My young roomy waited with me and we talked some more.  She paid me the biggest compliment by saying she was really glad she'd met me.  I had written some sites down and a few tips that the stoma team don't always remember to tell you, or tell you when a problem occurs, but forewarned is forearmed.  We were both a bit teary when we said goodbye.

It's funny how I met three lovely people being in a place I don't like being in.  Maybe if they allowed mixed wards......OK maybe not.

I spent a few hours with Karys talking grown up stuff about my will and the house and things I'm not ready for but had to.  I'd already had the conversation with her brother at the weekend.  They seem to be so sensible about things but insistent it will be years yet....I wish I could honestly agree with them.

My CEA is trebled in two months.  The tumours had doubled in two months in my liver prior to that.  I have been mildly wheezy with an annoying cough that isn't clearing anything since just before I went for surgery.  I'm not an idiot, I know the delay in getting back to chemo has let it run rampant growing wherever it wants.  I had no choice.  What life is having chemo in hospital for five days then 2 to 5 days leaking faeces through my fanjo?  It wasn't my fault the surgery was delayed, I'd have been on chemo by now if that had happened.  I can only hope this delay hasn't meant I've left it too late.  I'm seeing a mortgage advisor this week (god knows how I'll manage driving) and then will see my solicitor.  At least if I get things in place now, if anything goes wrong on the chemo, the kids will be OK.

2011 Surgery October Week 2

Sat 15th Oct

I managed to wash myself lying down, rolling onto my sides and then letting nurse and healthcare change the bed underneath me again.  After the pain of walking on Friday with the evil physio I was determined to stay flat over the weekend.  I told staff that's what I was doing and nobody seemed to be bothered by that. I knew, from epidural horror stories that women often got headaches afterwards but this was more than a headache, it was excruciating pain, photo phobia, violent vomiting, pains in my spine and back, stiff neck, blurred vision, hearing problems with constant noise in my head/ears.  All of these were allayed by lying down.

Having not kept any food down now since Monday morning I was getting desperate.  Nobody seemed to be listening to me, just throwing anti nausea drugs at me (I didn't feel sick, it was a reaction to being up) which increased the risk of constipation.  My stoma was only passing air.  But of course there was very little in there.  I sent a twitter message with my symptoms to Beating Bowel Cancer who was online.  After half a slice of toast I felt a bit better and ended up googling it myself and we both came up with a dural puncture from the epidural anaesthetic that I didn't even get the pain relief from, there being no beds in ICU.

The treatment was: bed rest (figured that out); caffeine (weird - I started drinking tea asap); hydration (I was on IV fluids due to not eating); pain relief (I'd started taking paracetamol on top of everything else I was on); a blood patch could also be used.

The needle which should have just administered anaesthetic next to the dural sac which is one of the layers of a "bag" containing cerebro-spinal fluid had made a hole in it.  The type of epidural I had was a bigger one than used in labour, so it was a big old hole.

A blood patch involves going back to theatre, having blood taken in a sterile environment, another epidural needle above the original one and then the blood should clot, filling the hole to stop the leak.  Then you just have to wait to replace the rest of the missing fluid but symptoms are instantly improved - after lying flat for 4 hours to allow clotting.

It was now 4 days since surgery and this should have been done after 24 hours.  I was feeling better from surgery, the pain was improving but I had these other symptoms preventing my recovery.

I managed a salad for lunch and a sandwich for dinner - lying on my side lifting my head.  The bed was still moving.  It was vibrating when I spoke.

Sun 16th Oct

Up to a whole slice of toast today.  Still getting pains down my spine and in my lower back - in fact they were worse now, maybe because the internal swelling was going down?  It was like when I was in a car crash with severe whiplash 20 years ago, I still have no idea why I have this new pain.  I still didn't feel sick but took the anti sickness in the hope it would help.

Maurice kindly went to pick Karys up and left her with me for an hour or so otherwise she'd not have been able to visit.  It was lovely to see her, but very disturbing and distracting having noises in my ears and my head and their voices sounded mechanical and robotic, so did mine.  I felt like I had permanently blocked ears like being on a plane taking off.

There was a particularly nasty patient opposite me.  She shouted all her conversations, repeated all her stories to everyone who came in (7 x tea, 6 x obs, 4 x drug rounds, hourly checks, Dr rounds, cleaners) argued with everyone about things she clearly didn't really know about.  For example, she argued that they'd changed her heart drug for one on a lower dose and that couldn't POSSIBLY help her and would make her worse.  By the time she was having this argument with the doctors, even when they pointed out she had read her dose wrong (2 tablets x 3 times a day not 1) it was still slightly less.  The quite obviously told her different drugs have different properties.  No shit?  I mean my patches are 80x stronger than morphine but both are opioid painkillers.  The same dose of morphine as my patches would kill me.

I got some peace when she and the old lady who sadly had give up, refusing to eat food, just the odd shake or cappuccino, went to church.  Old lady went in her bed.  She'd come in fully able, had surgery and lost the will.

Nasty Tea Lady had been zapped with my politeness gun following our exchange on Thursday and was now ordering more soya milk, having asked me how long it lasts, so that "Mrs Almond doesn't get a poorly tummy".  I was relieved she'd changed her attitude.  I can only assume she was scared of soya milk because she didn't know what to do with it and she was upset at being forced to deal with it?

Mon 17th Oct

Washed myself in bed again.  Two physios came today.  I told them about my symptoms, that I was reluctant to get out of bed if it might cause further damage, since I'd been unable to see anyone over the weekend.  One went to talk to an anaesthetist and he said it was OK so long as my symptoms didn't worsen.  Of course they would if I was walking?  So I walked to the nurses station and back, my hearing getting worse to the point where I couldn't hear myself by the time we got there, I had shooting pain down my spine when I got back into bed.

Dr M, an anaesthetist finally came to see me.  He confirmed I'd got a hole in my dura, backed up everything I'd thought at last.  He apologised (I could probably sue) and it was put in my notes.  He also told me about the blood patch, but given the time lapsed said the risks might be worse than any benefit I might get at this stage.  I wasn't sure, the thought of another puncture filled me with dread, the patch may not work and need repeating.  I'd managed by lying down for two days to eat....but how long would I need to live like this?  He said he'd return Wednesday to decide about the patch.

Pain team came again to check I was happy with new drugs.  I was taking gabapentin (sometimes given to epileptics) with the patches, and continuing with the lozenges (crack lollies) for breakthrough relief.  These were when I wanted them (PRN) not a timed dose.

That evening a blind lady was admitted who snored loudly all night.  She was having a stoma but because Mrs Loudmouth know it all kept shouting at her I didn't bother talking to her.

Tues 18th Oct

Blind lady had a shave this morning.  My face might have been a picture when I heard the electric shaver going, I really believe it was her face she was doing......

Physio came again to walk me round - a little further today.  It hurt my head and I hated the deafness and pain when I lay down again but I wanted to get home and I needed to walk if that was ever going to happen.

A new patient replaced blind lady - young woman in a lot of pain who at least was in my age group so things were looking up.

Phoenix came to visit during a free period which I'm sure boosted my recovery another notch, as did seeing his sister on Sunday.

Jean from pain team came again, my surgeon and then F1 Dr M C.  She was a young junior doctor and Mr A, my surgeon, had told her about my TV appearance and my "interesting" medical history and asked permission to take a full history as part of her training, to report back to Mr A.  I'm always happy to talk, maybe too often and too much, about my illness, it is after all my life now.  What she didn't realise was she would be there 1.5 hours until 17.15.  She took pages of notes as we covered all my four surgeries, 3 minor procedures under anaesthetic, various chemo, radiation, physio, menopause, side effects.  She'd have to type that up later...I didn't envy her, look how long it takes me to type up a couple of weeks!  She said some very nice things to me, that made me cry, because I believe she meant every word of it.

All through our conversation I could hear Mrs Loudmouth arguing with anyone and everyone.  She refused to wait in the day room when they needed her bed as car crash patients had been brought in.  "That's not my fault" was her response.  With the constant noise in my ears and her noise I almost got out of bed, opened the curtain and told her to shutthefuckup and have a little consideration for other people for once in her life.  She'd been single 26 years, I wasn't surprised.

Wed 19th Oct

Really sleepy today, didn't bother with washing.  By now there was a lovely lady in the opposite bed too and we all talked to each other and got along.  The day before I'd wanted to leave purely because being in the same room as that poisonous woman was making me so miserable.  Now I was happy to stay with good company and genuine, if poorly and frightened people.

Dr M anaesthetist came to tell me they'd decided the blood patch was too much of a risk now and as my symptoms were improving, though still there, the hole was closing on it's own and it would take a few weeks but it was better to let that happen naturally.  As things worsened over the day, rather than being bad all the time I was mostly relieved by the decision but still scared how long I'd be disabled by this, I needed to be recovered for chemo.

Thu 20th Oct

After my slice of toast I was sick as the tea lady was coming round and others were eating their breakfast still, The tea lady closed the curtain for me whilst Carla, young patient, told the nurse and Coral pushed her bell as I looked incapable.  I was crying in pain with every spasm shooting pain into my lower back down my spine, crying because I hate being sick and because I'd had 5 days of keeping food down and now I was going backwards.  The nurse just in the doorway wasn't interested but I got a fresh bowl to fill from a healthcare as they noted how much more fluid I'd lost.

By lunchtime I had to try to eat again to replace what I'd lost, determined to get home as soon as I could.  Every mouthful caused me pain under my ribs, felt like my stomach and a large hard lump under the stoma were pushing up against them.  Again, pain down my spine and lower back. I was pretty sure I had a blockage which was making me sick.  I'd been putting food in, nothing was coming out still and something had to give.

Physio hadn't been for 2 days.

Fri 21st Oct

My catheter was removed at 6am.  I ventured to the shower and sat on the chair the whole time, doubled over because the pain in my back was too much to sit up straight.  I'd had to sit outside for about 10 minutes whilst a patient made several phone calls in there.  "Sorry I didn't realise anyone was waiting".  I told her "There's always someone waiting on a ward this size".  Seriously, did she not think anyone else would want to use the facilities?  It was also one of two toilets for women.  Anyway, as I was drying off I started feeling shaky.  Now the sensible thing to do is pull the cord, naked or not.  So I threw my dressing gown and slippers on and staggered down the corridor and made it to my bed before almost passing out.  Sally told me off for being a hero and checked my obs.  Soon after, I was sick again.  Carla told my I smelled nice though (Calvin Klein darling).

Coral went home and a woman who had just found out she had pancreatic, inoperable, cancer was in her bed.  She had 10 visitors round her bed.  Carla had a couple of extras, but with the extra 10 all adults having several different conversations amongst themselves, the noise in my head and in the room was unbearable.  A nurse came in to tell them there were supposed to be 2 visitors, it wasn't fair on other patients.  She told them her diagnosis and was let off, because she'd dying.  She was going home the next day.  I am also dying but I would never allow so many visitors at once, everyone knows the rules, too many people at once is too much for me when I'm ill.  She kept going on and on about how she has 10 grandchildren and 15 great grandchildren.  I had to keep getting up every half hour to hour to go the the loo to empty a bag of air.  Because I didn't feel I could unleash the vile smell on the rest of the room.  It was hard to navigate past all the chairs, they even commented I was unsteady on my feet, having to grab bed rails on the way.  After a while it got too much and when they'd gone and nurse came round she started again.  I couldn't help crying and the nurse said she knew what was upsetting me and it wasn't fair and she was sorry, that nothing she could say would help.  She offered to have a word with her, to let her know my situation too.  But I couldn't deny anyone their initial way of dealing with the shock, the need to talk about it if that's what helps.  It just feels like a slap in the face that I won't see my first grandchild let alone my 15t great grandchild......having 2 kids that would be a horror in itself.

I had to leave the room later to sit outside and cry again.  She wouldn't stop telling everyone she was dying.  Holly, one of the healthcares got me some tissues and and gave me a cuddle.  I stuck my headphones on and bought some TV.