Tuesday, 24 January 2012

2012 24th January - Acceptance

I can't do the stairs any more.

Today at 12.30 I woke to a sandwich in foil, a mug of tea, my DN Nikki with the TV on.  Bit disoriented to say the least.  She'd been once, not wanted to wake me so gone off to do another call and do everything she need to do before coming back.  Told her to wake me next time.  Mentioned the inhaler and then got onto the bed which I'd been adamant I didn't want.  However, my plans are skeletal and open to change and the longer I stay in the house the better.

If I can't do the stairs I have two choices, going into hospice (my preferred is in the four bed Tulip Suite in Spalding and never come home.  Or try having a bed in the living room and commode. I can't bear to leave my house after just a week so the bed arrives Thursday and Maurice & Sue have been to move the sideboard and table & chairs into the conservatory - not quite conservatory weather yet.

The Day Before

Yesterday I went to the loo which is a 10' walk to the kitchen, same again through another door and then the loo door.  I collapse in a heap on the toilet frame seat, have to stand up to flush it because it's stupidly stiff and do my zip.  I stood again to get the walker and made my way back through to the living room.  I got as far as the kitchen door and had to push the 3 wheeler away and lunge for the sofa to try and catch my breath.  It was the scariest feeling,  I couldn't breathe, felt faint but managed not to panic and after a few minutes was up to moving to my sofa, the furthest, but with all my electric cables for laptop, iphone and tablet.

I phoned St Barnabas who said to ring GP for a phone visit. I got Beckie to ring from working because of my lack of voice.  She was told to call me again when she was with me and wait til they called back.  GP came around 2.30pm and talked though options.  We deccided to try an inhaler with a spacer.  He also suggested a fan so I need to fan shopping on line and a need a new smaller round coffee table now I need a hoofing great bed in here the furniture needs to squash  up a bit.

I have letters to write, my final message for Ketton Park and a few other things to sort out but nothing desperately important to me.  Just seeing people and enjoying things.  My body might be weak but it's not falling to pieces yet.  Nor is my mind.

I'm having to accept a lot now but I know it's for the best. There's no point fighting what's happening. I shall just continue to issue instructions from the bed or sofa!

Monday, 23 January 2012

2012 23rd January - BE LOUD BE CLEAR WEEK!

Since I am too lazy to do this for myself and it has already been done so well: I copied this from a twitter friend who also blogs. 


Be Loud! Be Clear! for Beating Bowel Cancer

Be Loud Be Clear takes place during week commencing 23 January. It’s a week to raise awareness for bowel cancer.

Awareness saves lives.

Do you know the symptoms of bowel cancer? You might think you do…
But just to make sure, Beating Bowel Cancer explains the most common symptoms:

1. Bleeding from the bottom (rectal bleeding) without any obvious reason. You may also notice other symptoms such as straining, soreness, lumps and itchiness around the back passage. These can often be caused by piles (haemorrhoids), but this is also a “red flag” symptom for urgent investigation, so it is very important to see your GP, who can take a full history and do an initial examination.

2. A persistent change in bowel habit meaning any unexpected or unexplained change to your normal habits of going to the toilet and emptying your bowels. It can sometimes be problems with constipation, and feeling that your bowel is not completely empty. It is especially important if you are going to the toilet more often or experiencing looser stools and/or passing lots of clear, “jelly-like” mucus.

3. Abdominal pain that is constant or which comes and goes. You should seek help immediately if it becomes severe.

4. A lump in your tummy especially on the right hand side.

5. Unexplained tiredness, dizziness & breathlessness (signs of anaemia).

6. Unexpected and unexplained weight loss.

I wish I’d known the symptoms. If I had I would have gone to the Doctor a lot sooner.

Watch the Bottom Line film which raises awareness of the symptoms of bowel cancer and how important an early diagnosis is.

What will I be doing to support Be Loud Be Clear?

I’ll be retweeting Hannah's tweets throughout the week and posting on my Facebook page about the symptoms of bowel cancer.  

I'll also retweet links to films and the nurse helpline from Beating Bowel Cancer.

Hannah will be attending Beating Bowel Cancer’s Parliamentary Reception which is on Wednesday 25 January 2012. Beating Bowel Cancer will be launching a report ‘Equity in Excellence for Bowel Cancer – delivering world class outcomes for patients with bowel cancer’. The report sets out how Beating Bowel Cancer will contribute to the delivery of the best services for bowel cancer patients and presents a new challenge to policy makers.
Bowel cancer is the UK’s second biggest cancer killer. It can be cured, and that’s why early diagnosis is vital. Take a minute to read up on the symptoms.

Worried? Talk to Beating Bowel Cancer

Their offices and nurse helpline are open 9am – 5.30pm Monday to Thursday and 9am to 4pm on Friday
Call 08450 719 301or email nurse@beatingbowelcancer.org
Bowel Cancer Symptoms | Beating Bowel Cancer (2011) Beating Bowel Cancer. [Online]. Available from: http://www.beatingbowelcancer.org/bowel-cancer-symptoms. [Accessed 21 January 2012].

Lisa's additional bit:
Hannah is currently clear of any sign of disease and forever may she stay that way.  She is fundraising all the time even if it's just £2 a donation.

My symptoms by the time I went to the GP (new practice, just moved area 31st July) in early December were: 

Pain in sacrum exactly where original tumour was, making sitting down painful, had to be done slowly

Going to the loo 12 times a day, loose, mucousy blood stained (once only bloody mucous) for about 4 wks

Complete fatigue, making mistakes at work, which I hated more than anything, analysts don't DO mistakes

Later I discovered the pain hadn't been recorded, the blood was listed as spots.

The second GP assumed I was there to see him about my depression and insisted that although the stool tests were clear it was still something I ate and to drink Lucozade and Yakult type drinks.

By the time I saw the third GP in the practice it had been two months. He had this to say:

Dr No3: - I think we should take a look, if you don't mind (mind, mind, you mean you're taking me seriously?) I'll get a chaperone.
It's not bleeding haemorrhoids - OK well I knew that, but nice to have it confirmed, there's no obvious signs of what the trouble is. I need to look further up, then if that still shows nothing we'll book you in for a proper look with a camera. I'm not looking for a tumour, I'm looking for inflammatory bowel disease, or at least trying to eliminate it, you'll feel rubbish until we get you sorted out, but need to be sure before I can treat you.

Two weeks later he used a rigid sigmoidoscopy, saw a bleeding polyp as they like to call them before they're confirmed as cancerous tumours. I saw a surgeon the following week, two days later my biopsy and that's when I broke down after he left the room telling the nurse I knew it was cancer and it was bad, having done my research.  She said he didn't want me to know, so I could enjoy Christmas with my family.  He was just so nice, I picked it up, putting his hand on mine when he talked, telling me eat well and enjoy holidays.   But she couldn't lie to me, just said "There really is a lot they can do now".  She was right they have done a LOT to me!

NEVER be fobbed off if you feel there really is something wrong, it's your body, listen to it and look after it.

I know I bang on about it all the time on twitter but I'm just trying to save lives here, to stop children becoming orphans too young, Young people widowed too soon.

Sunday, 22 January 2012

2012 22nd January - Busy Weekend

Well after a hectic day I was waiting for the 6pm to arrive, Becky had dropped in on her way from work for a cuppa and chat.  Six o'clock came and went as did 7.  I thought about ringing the number on the Blue Book but Beckie put my micro meal in and did a couple of bits I'd have asked the carer to do.  Didn't see any point in ringing since there was nothing else to do except wait for how long for someone to turn up?  We did wait until 7 giving an hour.

The next morning I mentioned it and Maggie rang the office there and then while I was there to let them know. Karys came in the afternoon since no tutor for the 2 hour lesson she had and stayed to finish it before coming over.  Becky managed to give her a lift the 2 miles from the bus stop so she wasn't wet or cold or anything.  We had a few nibbles, or rather I did and she had some proper lunch. It was time for the lovely Lynette in the evening who was her usual talk to the poor sick puppy in a baby voice as if I'm also thick, just because I'm ill.  If I showed her one of the mahoosive 5gb spreadsheets I'd created to model and predict the sales for the next year of Heat magazine she'd probably just stare at it like it was witchcraft.  After she'd done a slice of marmite on toast (because Karys was cooking our planned meal of salmon and roast veg, she told me to
"TRY and have a nice evening"
"Try? Why would you think I need to try to have a good evening, I always do, I'm quite happy thaks"
"Oh well you've got your visitor here haven't you"
"I'm still happy when there are no visitors, what's to be miserable about?"
"Awww well yes, life's too short"
"Well mine is yes"
(Head to side with pathetic look on greasy haired head and face) "Awww"

My fists were tingling like Spiderman's senses to punch her. I can't say a thing without the "aww" and tilted head.

We managed a nice evening after all. We ate our meal Gosh it was hard work pffft.  My daugher I'd not seen for 2 weeks yeah it was awful.  I didn't tell her who my visitor was, why should I?

Karys and I were both attached to the internet and the TV with chat in between, just like we normally do.  I forced myself to go to bed at a sensible hour so I could be up for 9am.

No carers today yay! Cos Karys was here :o) we ate what we wanted when we wanted and had no interruptions from strangers.  Deb & Phil, my step sister from mum's late 3rd husband came to visit.  I'd been the one to really lose touch I think, but anyway I messaged Phil via Beckie's friend list from the hospice and he replied.  So that's another one off my list who I know won't find out through the grapevine.  I don't want that to happen.  It hadn't been as long as I thought since they last visited, but still.

They (Deb and her 2 brothers and spouses), especially Phil, because he was funny and used to make us feel part of everything, kept an eye on Becky and stuck up for, they all did but you always remember the joker.  It was easier to deal with my mum putting us last, her husband dishing out the discipline.  The ever changing rules, the bi-monthly discussions about how I had the Blue Devil from Aunty Polly (whatever the hell that was) and that had I arrived there when I was younger he could have fixed me.  Instead he ignored me and spoke to my sister to say "tell your sister to peel the potatoes" when I was stood right next to her.  Picking at my confused mind, already depressed and trying to understand why my understanding of right and wrong didn't seem to fit with any adults in my life. But his kids knew he was strict, they'd lived under his rule, of course he was their dad and they loved him.

Even I made my peace with him before he died.  It was for myself as much as anything.  He'd been ill for a while and just seemed like was going to leave soon.  I'd been going after work and weekends to do the garden, which was his pride and joy, weeding and cutting the grass, keeping on top of the veg.  He spent all day out there but started to decline and wasn't up to it.  It was my way of saying, "the past is the past" and he came out when I was there and a look and a smile passed.  It felt like he was thanking me for forgiving him.  I want to interpret it that way so I shall.

Deb & Phil gave Karys a lift to her boyfriend "What time will you be here" "I said, I don't know" "Roughly" "I don't know".  Usual kind of trivial stuff she was getting a bit squeaky about things and we could hear him across the fields we thought rather than the phone waves. She couldn't ring him to tell hem she said cos her battery wad dead....I had to stick my nose in and made some suggestions (below in italics)

While they were here Debsi finally arrived after two diversions bless, she always has traffic issues (kept thinking I lived in Grimsby, then Bolton but thankfully stopped short of driving anywhere but Boston (village 5 miles from).  Lots of tea consumed and obligatory bubbles I see still in my kitchen (guess we forgot that oops) nibbles we did eat. Girly chat, magzines, trashy TV and PJs. Nothing else required.  Karys sent me a text to remind me to TRY to have a good time.

I waited till about 9.20 and realised I should get a move on.  Debsi was up and about so I banged on the floor of my bedroom with a bottle of hairstyling spray (oh the cruelty) and she came upstairs.  Her phone battery was dead

(made me think of the mini lecture I gave Karys about checking her phone was charged, with credit and off silent and with Kyle's home phone number in her phone to avoid her bf getting stroppy because he has no phone and she's never bothered to get the house phone number. When ever I say "why did't you ring/I tried ringing/texting" she has an excuse and it's maddening.) We also pointed out there were four adults in the room, all with at least one mobile (2 had work phones as well) and the house phone so having no battery was NO excuse.  My mother bought her two address books a year for a while (one Christmas, one Birthday, no idea why you'd use 2).

hence the banging on the floor.  She got a bowl and put some bubbles in warmish water (sorry Deb but it wasn't hot mate) I could cope letting her in for the top half but not the bottom half just yet.  If in a changing room that's one thing but because I'm ill and need help it's different. She left the room and started cleaning the bathroom while I finished and got dressed.  After I'd recovered from that I got most of the way downstairs and had a rest a few minutes halfway.  Made it to the sofa for methadone, yoghurt with tablets, compulsory YT. She disappeared up to finish cleaning the bathroom.  I should be able to manage to fill a clean sink with water now. Monday to Friday shouldn't be a problem, I feel like I've got a good relationship building with Maggie.

I rang the out of hours non emergency number at 9.45 to say nobody had turned up but no no point sending anyone, I needed to get washed and downstairs for my tablets and food so my visiting friend had to help me. He said someone would come just to check on me anyway.  It was a new one again who arrived at 10:20 said hello to Deb (still in PJs) and started apologising to her until she pointed to me.  She was very apologetic, not defensive but again she'd nad no communication.  She'd not been given my phone number or told the time of my visit.  She was also doing two lists of clients side by side. She said she'd speak to the office about me wanting a 9am visit.  I made the point and had to reinforce it twice more telling her it's not what I WANT but what I NEED.  The hospice would never have let me out if they'd known my care would be like this. It wasn't her fault but it's clearly not mine and I'm the one who suffers and I'm not happy about i  or prepared to put up with it.

She was back at lunchtime and got me a bowl of cereal, well I had toast at breakfast.  She is nice and we had a bit of a chat so there's no tension there at all, just mutual agreement that neither of us know what's going on just yet.

Phoenix had been here since Saturday night and rose about 2pm just in time for my Gabapentin alarm, so easy to miss that one unless I set an alarm.  We just hang out the same as with Karys but he doesn't cook..he does tea that's the most important thing.  Between them they emptied the dishwasher and carried on stacking it, made tea, usual family stuff, just that I sit on the sofa asking them to do things instead of us all mucking in.  I'm so used to the volunteers and nurses doing things for me it's much less of a jump now to asking everyone else. I realised my thumb ring had come off yet again, the spinning one meant for him so after he find it where it had fallen off in my room when I was getting dressed.  I gave it to him to stop me losing it. My thumb feels naked but I'll get used to that.  I've worn it for 13 years, probably nearly 14.  The 6pm arrived half an hour early which was fine, one I'd seen before, also nice, one of the older ones of course, who wasn't just in it for the money (I can't imagine they're raking it in).  She even offered Phoenix a drink when she was making mine an nuking my chicken curry (a really nice one again that I think Sue picked up rather than my online order. I wish I'd kept the receipt now just to confirm which one they were, or rummage through the recycling.  Hmm wonder if they've just been putting it all in the bin?   Must look next time I venture to the loo.

Phoenix's bike broke down last night on the way here, luckily a biker stopped and helped him check it over, fixed it long enough to get here but got his dad to pick him up.  So now he's not mobile until his dad gets into gear and sorts out the parts, we're hoping this gives him a push to get his new one sorted and he can zip about faster on his 125 than 30mph on his 50. I've got him all wrapped up, decent helmet with all sorts of vents for comfort, thermals, body armour, back protector, leather trousers, leather boots, leather gloves.  That's all I can do, he'd ride someone's bike so I wanted him to spend that time getting his  road skills up on a slow machine over the good weather in the summer and protect him as much as I can from other people.

I'm still on the sofa, having dozed off around midnight so I am considering staying put until Maggie gets here. That'll shock her ;o)

Thursday, 19 January 2012

2012 19th January - Day Four Teflon and Blue Books

Lots of vistors today, rather than one nice long relaxed visit they all involved constant talking by me so a bit worn out this afternoon.  Managed a 20 minute doze just now so feeling slightly better.

Maggie came this morning and I opted for a flannel and body wash rather than the whole shower business.  Got dressed (an effort always but easier if I don't have a full shower, even sat down it takes my breath and energy for a while). Downstairs she was straight in the kitchen to boil the kettle, wash my methadone kit* and get a  bowl of cereal and a yoghurt. It was very efficient but not rushed.  She's very good and instinctively passes me things as I would ask for them when I'm getting dressed.  Already in a routine so I hope she's always a regular in the mornings, she has few calls so it's very likely.  Her lunchtime call was covered by Judy as she had the afternoon off.

*kit includes a glass to decant methadone, syringe to suck up 10ml x 2 into a plastic tablet pot and a funnel to pour the leftovers back into the bottle.

I rang Social Services and got a call back from my Case Worker.  I filled her in on the niggling issues I've had so far and she said I should continue to let her know of such problems.  It's not that I want her do anything, just be aware.  Most things are fixed or dealt with now.

Around 11 the Red Cross lady arrived and was very nice, chatty, had cancer experience in her family which gave her a lot of insight, albeit from a different angle. Rather than up to 12 weeks she said I really need visits ongoing which is a real bonus.  I'll have one weekly visit from her until the ideal carer has recovered from her virus fully.  She knows about infection risk so there was no need to push this issue. The visit will be to just chat and befriend, someone regular to visit so I'm never alone all week and to do any bits of shopping I may run out of or forgotten on my online shop.  Perfect example, of all things I didn't order any toilet paper! Now just because I have a stoma doesn't mean I don't get through it, I probably use a lot more because I have to wipe clean the opening before velcroing it back together. Sorry if that's TMI but you should know me by now. She was just about to go and buy some for me with my 'arrived in the post this morning' 50p off voucher from Andrex when 2 District Nurses arrived.  It's been a serendipitous day (second use of the word, get me).

The nurses were here to check my blood sugar and leave the machine with me. I'm on steroids. for liver and brain tumour pain, which can affect it so I'll be tested once a week and can test myself if I think I'm going a bit hypoglycaemic, something I've experienced a fair bit since I was 18. One nurse was here just to know where I live should she need to cover Nikki.  They also had to check my bottom as I'd had a slight reddening suggesting a bed sore.  Nikki told me to shift slightly every now and then and stand every hour since I'm not very mobile.  Today she checked again and I am a star patient because it's nearly gone.  However, the reason I'm telling you this rather personal information is because she laughingly told me that she now had to take a photograph of it!  So with the curtains temporarily closed before Alison got back with my toilet rolls she got out a nice camera with a pop out zoom lense.  Awesome!  Some rules about recording wounds, injuries, sores etc.  It makes sense but when it's your bum in the air in your own living room with your jeans round your knees bent over the sofa......thought it was worth a mention. I also asked her to mention to my GP about Teflon injections for my vocal cords because not being able to make myself heard or understood on the phone is very frustrating.  There are some things I just have to do on the phone and people will obviously call me.

Next visit was, at last, the supervisor of Care Connect with, yes, my blue book everyone has been asking for.  Fiona had commented everything that should happen just today so I was totally prepared to make sure nothing got missed when she filled in the paperwork.  It was quite hard though because she spent half the 90 minute visit telling me all about her life long battle with eczema and diverticulitis (see comment after Fiona's on previous post).

Finally some peace so I decided to look at this whole vocal cord business which I am positive is lung tumour related.  One of my doctors at St Barnabas mentioned the Teflon but I've been so busy I've not had chance to remember to look into it until now.  Here is the best link I found with more information and I'm thinking the teflon isn't the best solution for me, maybe the 2-3 month option which involves no scalpels in my neck
and far less risk.


Wednesday, 18 January 2012

2012 8th January - Chilling at Home With an Old friend

I had a good night last night, in that I dozed off on the sofa I was so comfy, twice.  I went to bed about midnight which isn't the best idea when you usually wake before 6, I'm trying to get back into some kind of sleep through pattern.  I couldn't set the stupid timer to change the time the heating comes on in the morning, it's set to come on late because I was getting up late but coming on at 8.30 isn't enough when the carer comes at 9 so I set an alarm for 7.30 to put it on overriding the timer. Must try again tonight, it infuriates me.  Even with the instructions it just wasn't happy, I must have pissed it right off.

Any way carer came at 9, helped me shower, made a cuppa and got me a bowl of Frosties (sorry Phoenix) I usually have plain cornflakes, muesli with yoghurt or rice crispies and a banana chopped up in them.  It was nice to be clean but oh dear it takes it out of me so much.  I think I won't be doing it every day, it's just too much.  I need to set the hot water for morning at least - saving money by having a shower and even washing my hands in the shower (it's only me usually and I put it on for visitors here for any length of time, anti bac gel supplied). The washing machine and dishwasher are cold fill so I don't need the boiler working harder burning more precious oil just to wash my hands. Shower is obviously electric.

Donna came late morning and she stayed till about half past 5, just chatting, reminiscing, filling her in, talking about how wonderful our kids are and how much we love them, who they take after.  One of the GPs from the practice came to see me and suggested I drop a steroid tablet and see if the headaches have gone in that the radiation has shrunk the brain tumour enough to take the pressure off. Need to remember that in the morning.  Maggie came and heated some soup and buttered a couple of slices of bread, put some stuff in the dishwasher from this morning and that was all that needed doing really, though I did forget to ask her to take my laundry bin upstairs so I don't have a heap of dirty clothes on the floor.  I asked Donna to do it instead.  We had a lovely day just sitting chilling.  Simple things.

At 6 I heard what sounded like someone messing with my bins, then looked out of the window and remembered I ordered my delivery for 6 to 8 hoping the carer or my friends could put it away.  I told him I was very disabled and could he bring them into the house more so he did, and that included putting a basket that may have been on a wet outside floor on my SODDING NEW SOFA. What an inconsiderate idiot.  I bet it was because I asked him to walk 5 more steps.  He literally threw some ready meals on the floor, I asked him to put them in front of the TV so I could at least put the few fridge items and the frozen meals I ordered (putting the bags on the walker and in the little shopping bag thing on it.

My 6pm visit arrived at 17:48 and 10 minutes before she arrived I rang the hospice to see if they had an out of hours number for the care agency as I don't.  Neither do I have this magic book every single person asks me about like it's my job to get one. Anyway they said if I need someone I'm OK to ring Marie Curie but I don't and Maurice and Sue are coming later, I'm sure they'd put things away.  She's not English and came in the unlocked back door and didn't know where the key safe was.  There is no communication in this team!  I'll be ringing social services tomorrow to let them know how unsmoothly things are going....

She shouted at me in the same way English people shout at foreigners, either because she just does that or because I can only speak in a whisper.  I told her she didn't need to shout, I just couldn't speak.  She said "There's nothing to do?" What?  I said I'd like her to put my shopping away, that I'd had to put the fridge and frozen stuff away because I was expecting her at 6.  There were half a dozen Tesco bags on the floor right next to her in front of the TV.  She started fumbling about on the coffee table picking up drugs boxes saying "this shopping?" Again WHAT?  I had to point and tell her about 3 times before she could see what was right under her stupid nose.  So she said she'd try and do all that, I told her she had 20 minutes and I'd had to put most of it away so she should have plenty of time. I also told her she needs to wait until I've finished speaking and not walk into the kitchen because I can't make myself heard.  She said she'd go and have a look what I had in to have to eat.  Told her I know what I have, I'd like the mushroom lasagne.  She didn't ask me how to work the microwave but luckily figured it out.  Then when it came to the shopping she was just going to take it and put it anywhere, I made her stop and let me tell her where stuff went, I can't be crawling on my hands and knees trying to find stuff because I don't know where it is in my own house.  I say crawling because I expected her to put things in stupid places by which time I'd be too exhausted to stand. The kitchen paper she pointed out I got as far as saying "that goes in the bottom drawer...." she interrupted with "bathroom" "NO! You need to stop and listen to me finish, it's not toilet paper it's kitchen paper".  She picked up a bag of potatoes and told me it was fruit.  Sheesh.  I'd already put the fruit on the worktop she just needed to take it out of the bags and put it in the fruit bowl.  Then she made a cup of tea, my meal was ready and she checked to see where the key safe was for next time.  Joy, looking forward to that, being treated like an idiot in my own home by someone who doesn't know the difference between fruit and veg or toilet paper and kitchen towel.

Right Maurice and Sue have arrived, time for normality!

2012 17th January - Day Two at Home

Expecting a 9:30 or 11 am visit I had to get up and unlock the front door so the carer could get in.  Surprisingly a completely different carer (Maggie) arrived at 10:15 which was the time I was told.  As the woman from yesterday couldn't fit me on her list she'd been "allocated" (for want of a better word) me.  She did a few things, moved stuff about and made me a cup of tea.  I'd already had a yoghurt for breakfast and had my drugs, there was no way I was going upstairs, having a shower then tackling downstairs again.  Not like I've been playing in mud is it?  Plus I have lots of perfume and got a ghost set from my older sister which is really lovely, never sniffed that one before! Since it was nearly 11 and the actual times she'll be coming in future are 9am and 12pm she'd be back in an hour to do lunch.  For that ONE TIME ONLY I said don't worry I'll get something on toast later, I had breakfast quite late and forgot I had unfrozen bread that Sue had brought the day before.  Otherwise she'd have made a sandwich and I could have had it when I wanted it.  She was much more switched on and actually quite nice.  Nobody is talking to anyone though, nobody has a "red book" to write everything down in - what they do when they're here to monitor if my visits are required still, or if the level of care is high enough.  She had a go at the key safe but no success.

Nikki, my district nurse came by not long after she left and we had a catch up, she also took out my sub cut line because we were a running late going through the drugs and I'd put my jumper on and totally forgotten about it before I came home.  It's so unobtrusive I only realised because I saw it in the mirror when I put my pyjamas on.

As she was leaving she let Melanie, my new and lovely MacMillan nurse in.  Between us (me for my eyesight because there are tiny barely there arrows 2 of which were the wrong way round and bingo, sorted.  She set the code, put the key in and connected it to the wall mounted bit on  my wall.  It would take about 15 minutes if I had to come down, get to the back door to unlock it and then get upstairs for a shower, then there's shower time and dressing time.  I was obviously very happy to get it done.

Becky came about 17:45 and made us both a Chai before getting a bowl of lovely smelling foot soak.  Judy arrived at 18:15 and was really nice.  Again nobody had told her about the key safe (the actual code had been agreed with Maggie so was rather hoping there'd been some communication.  She also asked if there was a book to write in.......whose job is that?  While I was having my feet soaked Judy got my micro macaroni cheese, I told her the code and I'm sure she did a few other things but there wasn't much to do and the evening one is a 20 minute visit, hence I'll be having cold food or ready meals in the evening which is pretty much what I was doing myself.  Having someone to fetch it, put pepper on (she asked, good call I love pepper on most things) does make a difference.  It was a bit strange because I wasn't alone but obviously most of the time I am and you can't let visitors do things they're coming for or they cut your care back in the blink of an eye.  If it's her and Maggie most of the time I'll be quite happy, sadly Judy isn't back till Sunday so hoping I don't get Juliette back and that she just does early shifts.....shudder.

I've now got bright juicy red toenails and neat cuticles.  We both commented that my cuticles have barely grown in two months, the nail varnish and flowers from my birthday pedicure she did (I can't reach down there long enough anyway so they don't get done by me any more) was still on my big toes.  If I'd paid for that I'd think I'd got a real bargain! It's just so good to be in my house with visitors in more comfort.  There is obviously a slightly clinical feel about any kind of medical facility with plastic chairs and hospital beds, there's nothing like your own bed and sofa.

I dozed off on the sofa twice for an hour or so each time and finally went up at midnight, having taken my tablets and methadone nearly an hour late.  Proof of how comfy I was.  I woke up at 6 which was better, set an alarm for 7:30 to turn the heating on because for the life of me I couldn't change the on times for the heating, must have been tired.  Of course I only remembered to do it late at night.  A job for today.  I can't do the double stair trip again.

There may be multi daily posts this week, there's so much going on and I like being able to type on my laptop again with a full size keyboard, I'm blog happy!

Monday, 16 January 2012

2012 16th January - By Contrast to the Carer

After the carer had left last night Sue, Maurice's wife, came with my shopping,  another basket of laundry and some flowers . I think she's done 3 loads, at least one of them more than once to get our the musty smell - Phoenix did washing, which was fantastic, but left it in the basket for best part of the week. I've had an appreciative but informative chat on that one, bless him. He did dry the first load of bedding and even put it on his sister's bed, plus dried his own washing.
Anyway, Sue had already tidied and cleaned the whole house pretty much, ironed all my laundry!, fresh bedding for me to come home to. She took my second walker upstairs, fetched a parcel from outside and was generally up and down a lot before finally sitting down. It was so nice to be sitting on my sofa chatting, not from a bed. Plus I was dressed. Between them I've not needed or wanted for anything. I've been able to see my kids, make their memory boxes, had a maccies breakfast wrap, all sorts! My house is in a much better state than I left it and my teenage son made it. Imagine turning 17 and having a whole house to yourself, he had a mate and girlfriend round but no parties. Said his friends can't get there, I said good job house is in the sticks :-)
Maurice and Sue live in similarly rural area, though more populated place which is fortunately quite close, enough to visit and look after me.
I've got quite a few visits, both medical and personal this week to fill the gap of the hospice team. I'll probably write it in diary format from today.
Should be sleeping but still have hospice body clock.

2012 16th January - Going Home

I was excited from waking up the second time at about 5:20 again. I decided to have bacon and egg sandwiches with my yoghurt since it was my last chance.  I'll be cutting out meat again and as much dairy as possible and hope that helps with my insides.  Matthew the physio popped in for a chat and the nurses and HCSWs to say goodbye.  Yesterday there were a lot of goodbyes too.  One of the doctors came through to go through everything, to check I didn't have any new issues.  My nurse for the day went through my drugs and made sure I can draw up the methadone (did it last night too). Then I took my time packing from around 10, wrote a letter and a cheque to donate something specific (swivel tv bracket for the one in my room).  I got dressed and had lunch, more nurse visits to go through discharge (again where the hospice differs is they actually have your drugs ready and I have a check list which is helpful.

The taxi arrived while we were still going through all the drugs. Once everything was packed in the boot I was wheeled out in hat, coat, and gloves.  The driver didn't seem to understand the 2 second rule and was rarely over a second behind the driver in front,  mostly a lorry.  I had to stare out the side window to stop from telling him to stop bloody tailgating that I wanted to get home alive, not die on the sodding journey.  The chair was reclined back as far as I needed so feeling even less safe.

The first thing I did was turn the heating on and keep my coat, hat and gloves on. Then I had a battle again with wifi.  It didn't work for my phone or tablet in my room.  In the end I got up and reset the damn thing. It worked first time which is unusual for mine.

The carer arrived about 6:15 and told me the morning visit would not be 10.15 but 11.10 by the time she gets here, with my lunch visit at 13:00 it seemed rather pointless.  I'm not staying in bed till 11 before I have a wash or shower.  She said she'll try and ask someone else to come at 9:30 despite her ringing her boss and being told that isn't an option.  I shall be ringing my contact at social services tomorrow.  The key safe has been fitted but the code needs setting so I can leave my key in it and they can let themselves in to help me wash then come downstairs, get breakfast if I can't do it, being knackered from my wash and getting dressed.  She said she doesn't know how to do them so I'll have to come downstairs to answer the door when they arrive, nice.

She had very greasy hair.  She made me a cup of tea having spent half the visit giving me bad news, not even opening up the folded instruction leaflet for the key safe and made me some philadelphia on toast.  I think she showed the philly to the toast so I asked if I could please have some more (it's my bloody food for heaven's sake) so that I couldn't see the actual toast.  While I was eating she actually washed the teaspoon and two knives up in COLD water from my tap, I didn't hear the cupboard open for the washing up liquid under the sink ( I do like to try and keep a tidy sink area).  Then they went in the drawer.  I have a dishwasher, I have cancer.  I need to avoid infection. I do not need germs multiplying on things that touch things that go in my mouth.  So I told her there is no need to wash anything because I have a dishwasher "oh it's no trouble" maybe not, but I don't like things washed in cold water and have to be very careful about infections "oh ok, we're learning".  It felt like she was implying I had fussy ways that she had to remember.  Who thinks washing anything cold water is the right and normal thing to do? I'd better go to bed and get plenty of sleep since I have no idea which time call I'll get.  But it is good to be home.

Oh and my suitcase was in the wrong room so I had to drag, push and haul it into my room, left, I said, left !

Thursday, 12 January 2012

2012 13th January - For Those Wanting Pointers Planning a Civil Burial

I recently posted about my own plans for an outdoor green burial in a beautiful park with descending hills leading to a river, copses and spinneys where I can have a tree planted and surrounded by wild flowers (season dependent).
Since I knew I had cancer back in december 2006, I'd been looking into at the very least a civil celebrant. There was no way I wanted god mentioned at my funeral in any way, nor did I want people to be thinking about me in a cold church or impersonal crematorium building.
You can, however do exactly what I'm doing but include god and your own beliefs, so you get the best of both, or just swap the vicar for a celebrant, still have hymns and prayers, things just less "churchy" which for non church going christians for example would, I imagine, feel better. I think younger people are being drawn to this type of compromise more. Where a church may not be able to accommodate say your ex rock band playing a live tribute as you're carried out, with a civil service and funeral that's entirely possible. It's your day and how you'd like to be remembered and you can make it a pleasant day for those you leave behind despite the grief. I know, for all the pain, Bec's funeral was lovely and her ideas were very much like mine, even down to a wicker coffin entwined with flowers. The setting sadly cannot be matched anywhere local to me, purely since she is at bristol and I'm in the sticks. But I love my choice, even for the fact the village and surrounding ones are stone buildings only, being near a quarry. Just the drive there is beautiful, passing the ground of Burghley House.
So, where do you start?
Put your wishes in your will
Tell those close to you, ask for opinions and suggestions
Ask what they might like to do or say on the day (eg coffin bearer, read verse or tribute)
Once all decided upon, either arrange all or some things in advance or just have written "spec" of how you want your day to be and keep those with your will, also somewhere accessible where you know people will go to as soon as you die. The will is usually not thought about until after the funeral so it's important more than one person knows to look for this document!
These websites were my starting points, followed by a specific link to Manchester for Fiona and Faerie if you ever stop working long enough to read anything else.
I should add all of this is possible with cremation if that is your preference, internment of ashes instead of burial.

2012 12th January - Quick Update

So the equipment is all in at home, care package and funding agreed, red cross have my contact details to arrange a bit of extra support for up to 12 weeks. The paperwork to arrange payment of the care package can't be done until Monday. After Christmas and New Year holidays it's to be expected. I don't mind spending another weekend here but am excited to just be strong enough, out of pain, happy enough to go home on Monday.

My mobility is poor which has been the biggest issue. I need a wheeled walker (not zimmer, its stick height with 3 (for home) or 4 wheels). The worry was I'd not manage the stairs which I'd been finding hard on admission purely due to pain, not wanting to move, getting weaker. I surprised myself and Matthew the physio by doing just fine. I came up without needing to stop, going down was the hardest so I'll have to make sure I've got everything for the morning then come down when the care arrives.  I did the same number of stairs as in most houses.

That's about all for now I think.

2012 12th January - Happy Birthday Karys

My son was 17 on New Year's Eve but I was still wiped out with a virus and awful side effects of treatment, I should write a retrospective post for him to keep it fair, should they ever read this.

But today it's my eldest, though third born,  baby's 19th birthday today. My labour and her delivery weren't the easiest. She was 12 days late and my waters broke with a loud pop just as my husband Rob was setting off for work. We'd rented a pager since he was a gardener and not available by phone (no mobiles back then kids). Typical, never got to use it!

Labour apparently didn't start properly for 5 hours then stopped, was accelerated painfully with drugs. I got knackered, she got distressed and the scissors came out (if you don't know chaps please don't ask). Two hours of pushing later out came my beautiful 9lb 2.5 oz little girl. Looking around inquisitively, finger in her rosebud mouth. I lost a lot of blood and was touch and go for a while over a transfusion and was so ill I didn't even have strength to wash my face or brush my teeth, they even had to wake me when she cried so I could feed her. They wouldn't move me from the delivery room, it was another 12 hours before I got to the ward.

We spent another night at Pilgrim then about a week in the Johnson maternity wing in Spalding, it's not there now :-(

I had to take her back to a cold, damp, mouldy, static caravan. The council decided to modernise the remaining tenanted of 12 houses over christmas. I had to pack our entire house up 8 months pregnant, most of it went into storage obviously. Then move back into the house with a month old baby. They had a snagging list as long as me, electrician just wandered in my living room while I was breastfeeding, as if it was still a work site. I was not happy. I made them re-sand every splintery door frame and restain them. There's no way my baby was getting splinters from their shoddy work, neither were we doing it for the huge rent rise. She slept 8 hours at a month. I woke before her and panicked and made Rob check her, convinced she'd died or something serious at the least. After losing her brothers I couldn't bear it again. By 2 months she slept 12 hours. She was a giggly, happy, clever, joy of a child to love and impossibly I love her even more as an adult.

Tuesday, 10 January 2012

2012 10th January - Planning Is Good For My Health

The last few days I've started feeling myself again in my head, myself.  The virus is just the odd productive cough, cough regular, production less regular. I've been up to regular texts and emails which before were too much over and above the necessary.

Mostly I've been emailing Hayley my BFF over in France or chatting on the tablet which we used to do more regularly until I started to slide a bit. I want to arrange and pay for as much of my funeral as possible before the event and obviously this means I'll get what I want and have the chance to ask family and friends what they want too.  How often to people get the opportunity to do that? The thing is everyone can and probably should before it's necessary, keep a copy of all your wishes with your will - you mean you haven't made a will either?  Best get on that, why put your loved ones through the pain of probate without a will, dragging it out if family contest or squabble?  If separated your spouse might still get the lot - worth thinking about?

Lecture over.  Nicola my chosen celebrant came to see me today for the first time, though we have emailed. She's lovely as she looks in her photo and my age. Not only has she done lots of services at Ketton Park but she had similar ideas and suggestions to me. I have a to do list and a few things to think about plus questions for others.

Up until her visit I've been making lists and questions to ask and obviously things I want. The one thing I've never even given a thought is what I want to wear - well probably heels...... Again how would you make that decision for a loved one if you'd never had the conversation.  I know I want my favourite Monsoon underwear but I've got no further on that one since I've not seen my wardrobe for a month I have no iddea what I have! All this list making and planning has given me a bit of a buzz, I have a purpose,  things to do.  The nurses have all noticed.  I've also had a stream of visitors and long chats with nurses, healthcare support and the  student which have left me with a good feeling. 

Sunday Maurice brought Karys and Phoenix which is always good, then Becky came and painted my nails - also remember us being horrified at the footage of that lucky girl who survived the bungee break above crocodiles! Sheesh. Meanwhile Sue (Moz's wife, my ex boss) was washing, rewashing musty things my lovely son hadn't realised you have to dry quick or they go mouldy. She hoovered, changed my bed ready for going home and put dry laundry away and generally tidied up.  Remember there has been a 17 year old boy having the run of the place at weekends.  She even did some ironing and said it was almost enjoyable as I have a steam generator. 

Monday my mum came with my older sister Deborah. We only lived together for a year, then I was told my dad was my stepdad and I had an older sister at the age of 7.  From then I went on to meet them "again" and started spending a week there in the summer holidays each year but although we get on really well when together we don't have that close relationship having lived 80 miles apart. Last time I saw her a year ago I'd had Lisa visit so put my wig and I'm sure make up and didn't look at all ill.  The pain wasn't that bad back then by comparison.  Last time I saw mum 2 months ago I had a proper short haircut was in pain but didn't have a steroid moonface.  I had my voice, mostl likely gone due to tumours.  I wasn't bald with a few 6mm patches, small patches, mostly bald.  They said it wasn't such a big shock but I could see it in their eyes. I'm sure I wasn't imagining it and it hurt.

What didn't hurt is the fact that it was the first time in four and a half years I've seen my mother without her husband.  After he wrote a terribley inaccurate account of my illness and treatment he knows nothing about without my permission I'm afraid my patience and tolerance of his company has come to an end.  He's still a stranger to me and I don't see why at the end of my life, the way I look and feel I should spend a moment of it putting up with the company of someone I don't want to be with. My mum was my mum again, not a thing to be fawned over.  I have no intention of bringing up the past now, it's about people having good memories. I don't need the heartache or the stress, my lungs can't take crying, nor can my swollen liver. So no more tears!

Sadly laughing was quite painful on Sunday but I couldn't not.  Karys returned from the visitor toilet with her usually huge eyes like saucers horrified at her experience:
"I just walked in the loo and a woman was hovering over the toilet, door wide open pissing EVERYWHERE. Her excuse was she doesn't like doors! It really stank of fags and then two more people queued behind me so I had to clean it up anyway or they'd think it was me.  She was middle aged (on pointing out I'm middle aged she increased her guess to 50) as well"

We were still laughing when Kate, one of the nurses came to check all ok so we told her and she went off with a very vague description to investigate the matter.

I've come off the syringe driver onto liquid methadone today so there's a couple of days to see how that goes, most likely means I need to be observed for a few days as swapping type of drug can be hit and miss to get the dose right.  Though the care package has been agreed they also need to make sure funding is in place so that the carers turn up.  There's no way I'll be allowed out of here until every little thing is as it needs to be and I'm happy to stay here longer to achieve that.

I've requested that when I get to the point that I can't manage at home even with care, that I go to the four bed Tulip Hospice Suite in Spalding's new Johnson Hospital building.  The kids can come any and every day, stay over, prepare food in the kitchen area etc.. There is of course the chance there is no bed, in which case I'll come back here.  St Barnabas will continue to advise my GP on my pain management and care so I'm under the hospice for life now.  If my drugs need changing they'll bring me here so I'll always get the best care I've had to date.  My last resort is of course Pilgrim.  Please don't let happen universe!
Ambulance control will be advised of these wishes and my preference not to be resuscitated (hardest question I ever had to think about and make a decision on).  So if I need to call an ambulance they won't head straight for that awful place that now has more bad memories than alright ones (time spent in Bostonian was more pleasant).

Anyway, morbid as bits of this post are I still feel very positive today.  I have plenty more things to arrange and sort out and look forward to getting on with them and hopefully making and selling more jewellery.  I might take this opportunity to ask, as I don't know who is reading, if you would like to come to my service maybe you could let me know so I can keep your contact details with my will and ensure you are informmed.  I'm aiming this at people I've not seen for a long time but used to be close to or just those I've met odd times but it's not the sort of thing you want to ask.  This isn't a plea for guests!  It's because I know sometimes when I've heard someone from my past has died it affects me in a totally unexpected way and I would have liked to have said goodbye.  Saying goodbye is important and I'm very grateful I've been given all this time to do it with those few I'm close to.

Have a think about making a will won't you, and how you'd like people to see you off.  Mine will only involve my daughter wearing black since that's what she wears for example.

Friday, 6 January 2012

2010 6th January - Planning Ahead

This morning I decided to actually start making my plans more concrete.

I have emailed a civil celebrant I like the sound of who lives nearest the green burial site (Ketton Green Site) I have chosen after visiting with my oldest and best friend Hayley when she came over from France in November. The journey there was ok with seat reclined but I had to throw up as soon as we were there. I still don't know if this is brain tumour, effects of dural puncture or just the new me but I don't like it -same thing happened when I arrived at the hospice.

I then emailed the site to see if I can ask for a plot in a certain place because Hayley was able to walk so much further and said there was a better feel in one area which I trust her on.

My daughter looks like she's found a fantastic first car, lessons halfway through and my son will soon be off the 50 cc I bought him and onto a 125 complete with body armour, leather trousers and leather boots which is all I can do to help protect him. So they should both have their own transport soon enough, something that took me till 32 to be able to "afford" by sticking it alld on a card and loan!

The children still need to think about what they might to do with the house and I'm glad I can talk this through with them rather than leaving 2 bewildered teenagers in a sudden predicament.

I have felt a much greater sense of control now I've set the funeral wheels in motion. I have only one song I definitely want, a wicker coffin with wildflowers decorating it, only donations from all but children and immediate family, so just 2 wild flowers bouquets or arrangements and donations to be split between Beating Bowel Cancer, St Barnabas Hospice and MacMillan. Hayley (who I should point out is also an executor) knows all the details I've decided on so far, but I thought it wouldn't hurt to publicise my wishes and tell those who I've corresponded with but won't be there.

There is a good chance you'll get a report of the day and maybe an order of service uploaded on this blog too. I think it would be a fitting last post, though it won't be by me obviously.

It annoys me I forgot to take these expenses into account, it means more money taken from the children regardless of when it's paid for. Still it all helps with the decision making. Knowing what should be left. I'm saving anything I get, not having to buy food or use power or heating being in here which is an  added bonus! Just the thought of raking some of these funeral expenses back spurs me on to hang in there!

Sunday, 1 January 2012

2012 1st Jan - What Cancer Patients Do Want To Hear


I'll just post the link since the author may have more articles to interest you.

This one is the nice one so please read it, I'm pretty sure if you found yourself falling into the pit of saying something on the first list you've also been quoted on this one. It's how people are.