Wednesday, 28 December 2011

2011 29th Dec - More Cancer Faux Pas

A twitter bowel cancer fellow patient put me onto this link. Alison. I think unanimously we all said "hell yes that's how I feel" when reading. The author follows up with an article on what you should say. I tried to articulate my feelings a year ago but only received abuse because I was "obviously talking about how wrong x,y and z got it". Family fell out with me, yes the dying one (the people who saw themselves chose not to put things right quietly and think "thanks for telling me without face to face hurting my feelings")

I'm putting this out there because people keep getting diagnosed, 5 years of this crap and I've got used to a lot. Newbies into this adventure will be very raw and should be treated with more kindness. Comments in brackets and at the end are my own and accordingly more acerbic

You've lost so much weight. You look fantastic!
Thanks for noticing! My doctor says I'm malnourished.

You're strong and I know you can beat this.
Are you going to be disappointed in me if I die?
(also people will insist in fighting with me but how? It's in my body and I endure everything)

I read that kelp/almonds/asparagus have magical anti-cancer properties.
You should definitely eat some, then.

I know what you're going through.
Your grandfather's colostomy bag does not make you an expert on my medical situation.
(a classic - the number of people who know what I've been through because someone else had a totally different cancer even - I only know what I'm going through, my experience is unique to me, my family situation, my prognosis, my cancer)

That reminds me of when my dog/cat/gerbil had a tumor on her leg.
I'm sure that was heartbreaking for you.

God doesn't give us more than we can handle.
Define "handle."

(god is a non entity to me, I find it offensive you think he would hate me and my children this much should he exist)

OMG, I have/had cancer too! Let's be best friends.
Please stop weeping on my neck.

I know you don't want to talk about it, but I really need to.
Get a therapist.
(selfish, much?)

Cancer rates go up the less you exercise.
You're right. It's my fault I got cancer.

I am so impressed by how fearless you are.
Actually, I'm scared shitless, but I've gotten really good at hiding it.

(sneak round at 10am, 2pm, 10pm, 4am and hear me sobbing in bed/on sofa/in bathroom because I think no one can hear me. Who do you think I'm hiding it from and who am I protecting by taking this in my stride?)

I'm praying for you.
That kind of grosses me out.
(3people are, it does nothing for me and as I don't believe just let them get on with it. I know it's a waste -my attitude and strength got me this far)

I feel awful, too! I have such bad allergies this time of year.
You win.

Everything happens for a reason.
I'm beginning to doubt your intelligence.
(yes I've been a terrible person I need to die so the world can be relieved of my poison)

I had a friend who died from that same kind of cancer!
Wow, what a coincidence. Fuck you.

So do I, 2 friends Bec and Peter who were wonderful, beautiful people and I knew my path would follow their's that I am next from our group of Bum Bandits as we called ourselves half a decade a go. We met on MacMillan forums where I sought information from others. I diagnosed and staged myself from my endoscopy the day I actually was confirmed to have cancer and before lab results from hours on google images.

The others remain clear (and will remain so please) , if a little pleuritic (take more time off you loon and rack up more photo albums) and prone to hangovers in random European cities. Taking Caribbean holidays. They are really living, working, playing hard. Raising money obsessively - Peruvian treks, Killimanjaro, putting on cabaret events, the things I'd love to have done yet never got fit enough to do 3 peaks! Working stupid hours because they can. Trying to make sense of the fallout now 5 year sign off is here for them.

I'll be included in the 5 year survival rates (if I make it to June) weird isn't it, surviving can be pretty hard work.

They didn't have rectal, it was bowel cancer further up which gave them much better odds. I want them to go on living properly, working less in some cases. Relationships and babies when you've had cancer and chemo are possibly the hardest things to deal with and the deep hurt that never goes away with the potential consequences is something I'll not know.

I am thankful daily for the decisions I made - marrying and having kids so young. My life may be cut in half but I crammed it all in and can leave my fledgling adults behind knowing they can take care of themselves. More importantly I know I have the exact sort of loving, caring relationships with my children that I never had with any parent. All my sacrifices paid off, all my hard work, scrimping, working 2 jobs, never doing any housework when the kids were with me so it was all our time together. My only pain is that I'll not meet any potential grandchild and I adore babies. I have so much I'd like to teach them but then I read up on that too and had my plans for routines in place before I got to hold my first live baby. Both were happy babies and toddlers, slept 8 hours from 4 weeks, 12 hour nights from 3 months. I asked my mum during my last breakdown and depression if I'd ever been happy as a child. She replied, after a few moments too long "well I have got that photo of you smiling with a toy watering can". Says everything.

Virginia C. McGuire received her first cancer diagnosis when she was ten years old. She has heard everything on this list at least once.

Saturday, 24 December 2011

2011 24th Dec - Poor You, Stuck in a Hospice for Christmas

I've had a lot going on lately since my last post so I'll start with a diary list to catch up.
9th Dec - results of scan, Maurice rightly persuaded me that he should take the day off to accompany me given the time since my last scan, I may need a shoulder.
Having suffered increasing hip, back and leg pain plus 6 days of crippling head pains in the back I knew I had to mention them.
Scans obviously showed marked growth, my liver now looks half taken over, but most interestingly and almost a relief was the final reason for my 18 months of increasing pain ruining my life - close to my initial prediction a tumour on my spine, though higher than I'd imagined.  I mentioned the head pains, headache doesn't cover it.  Unprecedentedly I was sent for an immediate scan and back to clinic with results whilst sending Maurice off to get my new script for a steroid more suitable.
Back with Dr Tom, quick glance at the scan showed a single deposit where the pain stems.  He made a note of my new nice Mac nurse's name and said he'd call to let her know the lastest as she was already trying to get me into hospice for pain management.
I googled later and "thankfully" it's not the bit that changes moods or personality, just stability and movement.  So radiation to both new tumours asap and obviously this makes my prospects worse but the pain relief can be directed properly at last, from the first radation I know how fast it shrinks and reduces pain so it is a positive thing.
This is the reason I have never wanted a full scan, I knew it would go to my brain, like Peter and Bec, take away my freedom driving Izzy.  Losing my car is the biggest loss with this news, how glad am I that Peter buying his "end of life Porsche" prompted me to think "shit if it comes back I'll follow that path, bring on the convertible quick lets live while I can.
It was a terribly upsetting, long afternoon, lots of walking and waiting. I wouldn't have managed alone at all and it was lovely to have my friend there.  We got back and had a drive through to take back and then Maurice fetched me a few ready meals, then picked Karys up from the bus which she was very pleased about.  Neither of us had thought it would be such an emotional day
I told Karys, we were teary and she asked what they can do about it - radiation - so then we got on with watching the awful Black Swan.  We were really disappointed, expecting something really dark or chilling.  Maybe being hardened goth types we need a little more (or more suggestion than obvious in your face gore).
10th Dec - Time to have a chat with my son.  He's been so great, like Karys but he doesn't have the teary moments, even when the Dr told us this could be my last Christmas he just held my hand while I cried but stayed calm and strong.  He says he's fine, doesn't think it's anyone's business to talk to them but that he will talk to his sister if he needs to.  I'm so scared that he'll crumble when I'm gone or a while after that I'm trying to put in place some kind of net for him that he doesn't fall through and go wild, off the rails, angry at the world.  I have no reason to think this might happen, but how will I know?  Karys has her long term boyfriend, Phoenix is a boy with an unemotional father.  I'd hate my early death to ruin either of theire lives. 
When I told him how amazed and pleased I am the way they are handling things, being with me, carrying on just being so positive and supportive, his response was "that's because you raised us".
I cannot tell you after over a decade of abuse about abandoning my kids (shared care, I got weekends and 2 evenings), being no kind of a mother etc, to hear those words in that context finally wiped away all the tears caused by the haters, the ones who didn't understand that me working, while their unemployed dad cared for them was actually better than two unemployed parents on benefits spiralling down into worse depression was the right move for THEM.  Every decision, most of which hurt me more than anyone, has been for their sake to make sure they had the most stable, consistent upbringing.  I do not believe in fathers having crumbs of alternate weekends.  We made those children on purpose, we both love them, they need us both.  But still, recognition that my influence has rubbed off on them and helped them cope with all of this is a gift for him to see it that way, let alone tell me.
12th Dec - Monday Melanie Mac nurse visit.  Aware of my news, we had a short chat about that, a few tears - again about my final loss of independence and being more alone than ever.
Then the news that there is a space in the Lincoln St Barnabas hospice tomorrow.  Before she could finish the "I'd grab it if I were you regardless of it being so close to Christmas..." I was mentally packing. At this point I thought I'd be sorted and back for the big day.
13th Dec - Having ignored Lil the nurse at Beating Bowel Cancer about asking for Marie
Curie to stay to help pack bag etc I was feeling shit in the morning.  I crawled in pain, slid bags down stairs, myself downstairs, puffing and panting.  Idiot.  The transport (man with a car) arrived and after reclining the passenger seat all the way we set off.  I tried to sip a Fresubin to make up for lack of energy on the way.
The second I was in a wheelchair I was in agony, by the time I was crying in pain on the bed I felt sick and with nurses and a Dr trying to get me comfortable I threw up a few times before finally getting to my usual "best".
The next few days were spent titrating my new drug, methodone.  Gone are the crappy patches and breakthrough crack lollies, which no longer worked anyway.  I went to the hospital to have another radiation tattoo on my belly and my face mask made for the brain attack (whole brain).  Consensus finally is that the dose is quite low so I may actually keep my hair. I asked Phoenix to bring my clippers in just in case.
Saturday morning I started hurling again every couple of hours, made more miserable knowing my friend Katie was trekking from Manchester via my house to pick up Karys.  I wanted to be looking better, able to enjoy my visit, instead I just slept in the dark until they arrived.  I still improved while they were here so they could see I'm still in the right place, pain management just takes time.
18th Dec - Sunday Katie swung by on her way home and Maurice and Sue came too.  By this time I'd had a methadone syringe driver fitted so I was feeling and looking much better.
Radiation started and ended this week, Monday to Friday.  First 2 days a wheelchair and taxi were booked - first taxi I couldn't get in without tilting my head!  I tell ya, I'd treat you to some comical insights but I was in so much pain in the chair (later changed to stretcher ASAP) I couldn't draw on my own humour.  We ordered a Fiat for home.
Having been sick in the morning I was also sick after dinner, but I'd felt queasy in the taxi.
I don't like random sickness :o(
Ambulancemen got me there and back in 45 minutes - Monday was 2 hours, Tuesday 1.5 hours.  In a chair, in pain - better Tuesday because I had injected morphine before going - again the importance of being in a hospice, that doesn't happen that fast in a hospital, things take days and they pussyfoot about.
Maurice has been a couple of times this week breaking it up.  The radiation tiredness oddly kicked in from day 2, increasing of course. Insides definitely upset but apart from that feeling better already.
The hospice food is awesome ( 3 courses), nurses as you would expect, special.  Also they have upstairs accommodation where the children can stay.  They are coming on the train today (I hope) so we'll have our Christmas in a lounge (not my room) which has a tv, fireplace, table.  It will be as close to home as they can make it with the incredible advantage of on hand pain relief I wouldn't have at home, instant help should I have any problems.  The children don't need to do anything for me or worry about me.  It's ideal.  No washing up.
Maurice has offered himself as chauffeur, knowing I have nobody else to ask, by the fact that I'm not in contact with anyone else regularly so feel unable to call in a favour after months of silence.  As such on Boxing Day he's driving up from Watford where he's visiting to come to Lincoln to take my babies home.
"Stuck in here for Christmas?" Yeah, right.......

Monday, 5 December 2011

2011 5th Dec - Till You Go Walking In My Shoes

Can you put yourself in my shoes for five minutes?

Five days a week I spend 24 hours alone, in pain every time I get up to get a drink.

I lie on my sofa, I cannot sit, the pain is worse sitting up and lying on my left or flat.  I watch TV, because what the hell else can you do confined to bed/sofa?  I play some games too but for company, the TV is on.  Yes I watch shit I would hate to admit to a couple of years ago, don't criticise me for it, it's my way of coping with the quiet.

I have no appetite so force a yoghurt, piece of toast and maybe a ready meal down, sometimes not even that much a day, it's too painful to get up.

So I lie on the sofa, then go to bed, woken a few times by pain if I roll from my right side. No visitors - other than district nurse monthly.

Just sit and imagine how that would be for you, alone for five whole days in a row nearly every week for months on end, how isolated and lonely and miserable might you feel with nobody to help, get you a drink or make you a meal, make you comfortable when you're rolling about in agony unable to get comfortable. How would that feel, would you feel happy?

My right shoulder hurts from never being in a different position. Thats my life. My existence.

Yet most days I somehow manage to put all of this away and still be happy.  I get odd texts from the BBs, emails from my daughter in the evenings.

Luckily my one friend (BBs and long distance excluded) calls sometimes daily to chat about anything and everything. If I'm feeling shit I might mention it, or I might not to distract myself for that half hour of escapism and contact with a human being. Sometimes I fall asleep around the time he calls but he still calls. It's just enough to manage, if I had lots of people ringing daily I'd go mad but nobody did until he started.

Oh apart from my mother with this list of questions/interrogations making me think once more about how crap my life is:

How are you eating (same as last two years, I have NO appetite)
How is the pain (I was trying to block it out but now you ask, fucking shit)
How are you sleeping (in my bed/on sofa, woken by pain same as EVER)
How is your mood (since I knew you'd ask all these questions I'm pretty angry/distressed now)
Have you seen the children (yes every sodding weekend like I keep saying)

I finally told her to stop, she said she thought I'd prefer to talk about myself than hear anything she had to say? WHAT? I'm so sick of myself and my weekday existence if it weren't for the weekends I'd give up now. What I suspect she means is she needs to update her online "friends" so she sounds like she is a proper involved mother. Unlucky. After her husband wrote a very personal, detailed, incorrect article about me without permission saying I MUST have chemo asap after surgery I won't give her personal updates any more for fear of what else he will twist. Nobody tells me to have chemo, nobody. The chemo does NOT make my tumours disappear only to reappear again, it never has, it slowed growth in my lungs and shrunk a bit of the liver tumours, all of which have increased again, possibly a lot. His article was a load of rubbish and after taking it down he wrote a carefully worded apology which didn't really feel like one.

After finally confessing I cannot cope with their forced week long visits every few months (every afternoon they sit here talking about nothing, I feel old in their presence, if I want to do anything I can't for a whole week because they insist on coming every day) my mother has refused to visit without her husband so I shan't see her again, this is where we were 3 years ago when I was having chemo. She chose him over her sick daughter, she's done it again. No visits unless he comes, attached to her like a limpet. That's love for you.

When my kids are here at the weekends I won't cry like I do at night or during the day when I am so lonely and miserable. This weekend Karys got upset and it breaks my heart that I'm hurting her and can't stop it.  We had cross words about a misunderstanding and she was mostly upset that she got cross with me because we have so little time left.  We had a cuddle on the aptly named cuddle sofa and I told her I'm just trying to give her all the advice I need to before I go to help her cope with life without me there. I told her we can still disagree on things, that I can still be wrong.

I'm going to have to talk to my son soon to see what he's keeping inside.

The Mac nurse (new one) has increased one drug by a third, it's no where near enough. Now I've had my scan I hope she can get me a hospice bed to sort this out. My quality of life is the reason I stopped chemo but still it's eluding me.

I'm trying to prepare for the end of my life, sorting my mortgage, my will, letters to people, my funeral, what to do with my belongings, making sure my paperwork is filed and easy to find, making memory boxes for my children. Oh and I'm still trying to survive day to day in all this pain.

Please don't ask me to tell you how to deal with my illness, how to communicate with me, what to say and when.  Your day goes on as normal, perhaps tinged with sadness some days or the odd tears, fears for yourself or your children.  You can still work, play, go out, have friends who don't abandon you because your illness is "too much" for them to cope with.  You may have your own troubles with money, work, relationships or health but unless you've walked in my shoes you don't know how hard this is, alone.

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.

Sunday, 30 October 2011

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.

Tuesday, 20 September 2011

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.  


Monday, 12 September 2011

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.

Tuesday, 2 August 2011

2011 - 2nd August Pretty Things

I'm often taking photos of things, mostly they get deleted - here are a few I've taken lately that make me feel glad to be here:

Mr Bee needed a sugar rush

My view from the conservatory and the decking at the back

Speckled Wood butterfly - had to google this one

The first Peacock butterfly I've seen in years

One of many Red Admirals to keep me company this summer.

I've even been logging my sightings the last few days on the which I found when I was looking up the Speckled Wood.  I've got a phone app to identify birds because I'm ashamed to say I wasn't too sure about some of the common bird names - at least I know a wren from a sparrow now!
You might think it's a bit late to be going back to school over basic things but if I see something I at least want to know what it's called - and really every day should be a school day or our brains will seize up.

I'd include photos of my kids but they won't let me.

2011 - 1st August - Turning Japanese For The Umpteenth Time

Scan day. My "take a couple of months off and we'll do another scan and review the situation" scan. It was baking hot again, lovely. Top down in the car and a book to occupy the time. Drinking time is now reduced to half an hour, not an hour. Seems a couple of patients have brought two visitors to keep them company taking up nearly all the seats, good job I scan alone isn't it? Mandy checked me in, the usual questions and I chose blackcurrant - instantly regretting the taste of saccharin sweetness. Should have gone for plain water but a whole jug of water is even harder to get down in half an hour.

The nurse called me through to be cannulated and asked how my veins are, I pointed to the three scars inside my elbows "PICC line, PICC line, PICC line....". so just the one option then. It took her a couple of minutes to get it sited, because once it was in she seemed to have hit a valve so no blood was flowing and it felt rather uncomfortable as she wiggled it about and I could picture what it must look like, the battering ram of the needle pushing at locked doors. I'd forgotten my crack lollies for the lying down pain - last time she quizzed me about what I was going to do with it. Luckily I'd increased my own dose on Saturday with spare patches from the last dose increase the week before which didn't work. I was now on 100mcg an hour. (Since increased  and now on seven milligrams a day - equivalent to 70 of morphine a day). For pain which nobody can definitely identify.

I sat next to an old man who was next to an old woman. Feeling young and old at the same time. "Lucky you brought a book with you" he said
"Been here too many times to not bring one"
"So you're an old pro are you?"
"Yeah something like that....."
Afterwards I thought maybe I should have talked to him in case he wanted reassurance but I had been interrupted halfway through a chapter to be cannulated and was trying to catch up and not lose the thread. I caught a look at his watch - nearly 3 already and I was after him, plus had to be at the surgery for 3.40. I was never going to make it.

Two emergencies were taken in before us - I've been one of those emergencies February 2008. When they took my sick bowl away from me and as a result I threw up dark green bile and contrast fluid all over the door frame and floor on my way out. It was after that I had the delights of the NG tube. I stared at the floor - no trace there now of course. That must have been a bitch to clean up...

The nurse who called me in, just before another patient was almost wheeled in on his bed recognised me. "I remember you, you were shaking and shivering you were so cold last time". She fetched a blanket straight away. Then the most annoying question to a patient like me EVER "NO, I AM NOT OR CANNOT POSSIBLY BE PREGNANT". The cannula nurse had asked them to keep my left arm by my side as she'd had to use such a small needle and it was short - she was worried it would fall out. I still had to raise my right arm though. That scan is going to look odd. Thankfully I wasn't there long enough for pain to kick in. I got dressed the second I was out of the scan room and got my car keys, ticket and disabled badge ready to hot foot it out of there. Mandy spotted my keys and I think that got the needle out a little quicker than the usual 15 minute wait. I sort of skipped/jogged to the main entrance, I can't run but walking was too slow. I was out of breath by the time I got there and of course with 12 minutes to my appointment the receptionist was training another woman so took her time.

I rang the surgery and they put a note on the screen to say I was en route. I thanked Dr B for waiting and told him my pain relief still wasn't working at night but had got unbearably bad the last couple of months. I told him I'd increased my dose again after the last Dr's increase to 75 and it had improved but still wasn't working. I asked if maybe it was worse lately because the fistula has shrunk and there is a build up of mucous and waste from retractions post chemo which could be causing extra pressure to my theory of scar tissue causing the original pain. He agreed with my theory after examining my bones and tummy, noticing things were a bit backed up at the moment - they were, I'd eaten a mountain of veg and no movement for 24 hours. I asked if he thought the pain was getting worse or that I was just used to the drug. He said it really was a hard one to answer but hopefully when I have the next surgery they can clear out the redundant bit of colon, maybe cut away as much as they can and then I'll have minimal build up to worry about. I daren't hope that if/when that happens I can drop the dose again. I have no desire to spend the rest of my life doped up on controlled drugs. He settled on a new dose of 125mg patches.

I waited for a few minutes for the prescription to be made up - only to be reminded that they don't stock controlled drugs in the surgery. I live too far to have to go to a pharmacy, yet there is a pharmacy next door so the convenience is only that I can save time queuing in the pharmacy usually after a consultation that needs a prescription. While I was waiting I noticed a I know they have a reputation for having old reading material in waiting rooms but seriously.

2011 28th July - One Year On

Thursday marked a year since the phone call that changed my life forever - the one where I was told instead of a tumour at the base of my spine or in my pelvis there were in fact tumours all over my lungs and a couple in my liver. A year of blood tests, scans, countless stays in hospital, surgery, emergency admissions, chemo, agony, bodily waste coming out of places it shouldn't and not where it should. A year where the man I loved made his choice and I wasn't it. Many, many weeks of being alone day after night after day alone with my thoughts. But it was also the year my kids came closer, growing up at the same time and giving up their time to keep me company. Where well intentioned plans to "do things" fell by the wayside as inevitably do. A few hardcore friends surprised me with their continued ability to keep me going - visits or calls that aren't made out of pity or duty. Spending time with people who understand my limits but don't draw attention to them, work around them, don't give them recognition so even I forget for a few hours.

The hard times are those I'm expected to dwell on my situation, to bemoan my lot. I'm not interested in how hard things are or have been I'm interested in right now, this minute. Why worry about what could have been? Taking advantage of everything. Am I in pain? yes - so I need to do something distracting, read a book, play a game on my phone, make something, study the birds and the insect activity in the garden. I don't need to sit (or more often lie) and concentrate on the pain, to give it recognition and let it take over.

It's hot, wonderful, I can spend most of my day revelling in the sunshine and listening to the birds, checking their nests, watching the butterflies, admiring the many shades of green in my garden, the flowers, I've even fed honey to bees who get locked in at night and are too weak to fly. Have you ever seen a bee feeding up close? No neither had I until I got cancer. Nor did I know that an admiral butterfly has a fluffy body - that I can still remember the common varieties from primary school I'm glad but I've taken to examining up close every insect that comes into the conservatory. Black jackets are like black and white wasps or hornets but they buzz quietly, have a pearlescent sheen to their bodies. I didn't know that before I got cancer.

It's raining - great I can curl up and listen to the rain on the perspex roof of the conservatory and read more books under a blanket with a mug of tea. I can make something with clay knowing it won't dry out before I've decided what I'm doing

Why are we never happy with the situation we're in, always looking for something better, but not in an ambitious way, in an ungrateful way? I don't know, but that's how I spent over 35 years of my life. I finally, really understand "stop and smell the roses", I get it. I don't just understand it, I feel it, I live it. There is so much wonder in this universe, even in the small patch of land I occupy, so much life. So here's to another year of enjoying it.