Wednesday already...........

I'll combine two days here as I didn't get chance to update last night.

Tuesday:
This morning I popped out with Lorraine to the Cancer Support Centre in Widnes. I was really surprised and impressed at the range of support available to cancer patients and their carers/families. You can have massages, facials, reiki - all free, and there is even a luxury caravan in Wales that can be booked. So, maybe one day we'll avail ourselves of some or all of these services.

Our main reason for the visit was that Dad had asked about physiotherapy for his back and shoulders... his doctor didn't think phsyio was suitable (NHS physios aren't hands on, they'd just want to give him exercises, which he wouldn't be capable of doing) and she suggested I try Macmillan to see if a massage therapist would come out to the home.

The people at the Cancer Support Centre are all volunteers and for health and safety reasons they don't do home visits. We met a lovely lady called Margaret, who'd worked as a teacher all her life and took up massage when she retired. She showed us some basic moves we could try on Dad and gave us some advice on massage oil. She demo'd on Lorraine. As we left she gave us both a big hug and asked for Dad's name for her prayers. It is so moving how people can be so giving. I know for fact that some of my cyber friends also pray for Dad. I was quite choked as we left her lovely therapy room. Dee, the Centre co-ordinator also had a chat with us (and kept offering tea or coffee) and the whole place just had such a positive vibe about it. I hope to go back there soon.

As it turned out, Dad's back massage was a bit of a disaster! We were going to do it while Lorraine was here, so that we could turn Dad better in the bed. However, we forgot and she'd gone off to work by the time I started it. Things got off to a bad start by mum and dad squabbling as I was getting prepared - I'd got the music too loud and couldn't find the volume control and mum came in fussing about it. Dad then got irritated at her fussing!!

We (Dad and I) managed between us to get Dad on his side, but it took a huge effort from him and the whole process seemed to exhaust him. I couldn't really reach all of his back properly but I did my best (and actually thought I was doing an ok job). Dad talked constantly - asking the time, asking about the music I'd put on (a New Agey relaxation CD), worrying about how we were going to get him back in position. I chided him that he was supposed to be relaxing but he clearly wasn't and we stopped after a little while. I'm not sure if it helped! As I started to turn Dad back in the bed, I realised that he'd been to the toilet and so clean up operations had to commence. Ah well, long time since I did Poop Patrol so I suppose I need to keep in practice!

Picked up Emily from school and popped back to Widnes to get some stuff from the Chemist. Then I had to get ready as I was out to meet Lynn, an old friend and colleague - she's kind of like my mentor. Sadly, Lynn lost her dad (suddenly) a few months ago. We had a good old natter and chatted about my plans for work when I'm ready to go back. Of course, I have none, other than a few vague ideas! Lynn may be recruiting in January so she's asked me to think about the vacancy she'll have and let her know if I want to throw my hat in the ring.

When I got back I sat in and had a chat with Dad for a while... he likes Lynn and her husband and wanted to hear all about her latest plans (she's always pretty active on the property market!). He was delighted when I said she'd bought a retirement property in South Africa, and I had to describe it all to him in detail.

Dad settled earlier than usual - before midnight - and I went online as usual.

I spend far too much time online - sometimes I feel like the internet is my little comfort blanket between me and real life. I visited the usual cancer websites - Macmillan, Johns Hopkins and PCUK. It amazes me how many people are praying for miracles that their loved ones will recover from PC. I started to feel quite guilty that I'm not doing so. I have only once in the last 5 months hoped for a "miracle" - in the period when the Docs started to question that Dad had cancer at all. I wished that his biopsy would come back benign. I almost convinced myself it would. Then when it didn't I just accepted how things were and started to plan for how we could deal with them. It never crosses my mind that a miracle cure will happen. Is that wrong?

So, bed at 1.15am and then up at 5am with Dad (he was vomiting) but then I got a nice lie in until 8.30am, as mum had done the 7-8am medications etc.

Wednesday:
When I finally crawled off my mattress (literally, some days now that my old bones are getting creaky!) I got dressed and had breakfast. I was picking Roy's parents up at Manchester Airport at mid-day but their flight got delayed an hour so Lol and I went to M&S for some food and stuff. Dropped her off and got to the airport just on time. They took ages clearing baggage etc., so it was 4pm by the time I got home to Leeds. I had planned to have something to eat with Roy, sort the house out for the weekend (we have guests) and then drive back.

Poor Lorraine has missed out again - I had tickets for Sound of Music this coming Saturday and Lol, Emily and I were going. With things as they are, Lorraine didn't feel happy leaving mum on her own and so she told me this morning she is going to back out and stay here. Emily's friend Fran is coming with us instead.

I felt awful tonight - I'd said to Roy that I was driving back, but he had got it into his head I was staying home and driving back tomorrow. I leapt up at 7pm and said "Right, I'd better make tracks" and his face fell - "where are you going?". When I told him back to mums, he said he thought I'd been joking about driving back. Anyway, only another two nights away and I'll be back home.

When I got back, Dad wasn't so happy. He said he felt bloated and yukky. It's very rare that he complains of not feeling well (ironic, isn't it!) and so it seemed strange to be sympathising with him over it. He couldn't get comfy, so I gave him some Oramorph. He's just settled down (just after midnight). When things like this happen, I start to wonder if we're about to turn another corner, but then he bounces back. We'll see. Brian (District Nurse) was saying to Lorraine earlier that he thinks Dad is deteriorating. I don't think I've spelled that right but my eyes and brain are too tired to check!!

And another week begins

Back over to mum's this morning. All is well. Mum is feeling a bit better, but doesn't look great.

It is so hot here. We have fans going in both the main rooms but as soon as you get up and do something you're all hot and bothered again. It's only high 70's too! Heaven help us if we get a proper heatwave in the 80's or 90's.

Dr Rathbone came out today - she said Dad's BP was slightly low, and steadily dropping. He asked if that was a good thing and she said "I don't know, really". In other words - no.

I don't know where the day went, really.... before I knew it it was 9pm! Just after 10, Dad asked me to rub some ointment onto his shoulder and buttocks, as they were achey. It is really difficult for him to turn on to his left side, but we managed it and I think he got some pain relief from the massage. He was keen to have Oramorph at bedtime (around midnight).

So everybody is settled except me... I really should go to bed!

Another weekend is over

Thursday night/Friday morning: Got to bed at 2am after having a chat to Dad about how we could get in touch with some of his old gym buddies... they'll think he's not there because of the hip operation he was due to have in March, and he wants them to know what is really wrong. He's given me directions to the house of one of them, and I'll call in and have a chat.

Later on Friday morning Dad was up at about 5-ish, for his usual early morning bout of sickness. He settled back down quickly and slept through his 6.30am alarm. I got up for the last time at 8am to help mum with the tablet routine. I wanted to be up and out early to pop to Marks & Spencer for some food before picking Auntie Stella up for her visit. Also had to clean the fan that is in Dad's room as it had gathered so much dust!

So, Stella came and had lunch and then just before I took her home Lorraine and I went to look at over-bed tables for Dad in Prescot. We ended up ordering one online as it was about £30 cheaper. I hope Dad likes it... hopefully it will arrive next week.

Dropped Stella off at about 3.30pm and then headed home. By the time I got in, Roy had set up the table in the garden as it was lovely and warm, so we ate al fresco. First time this year, I think. I had been lazy and just got salad and stuff from M&S so it was all nice and easy. And quick! I had been looking forward to a nice cold glass of white wine.

After that, just lay on the sofa watching TV - I was too tired to do much else! Also had left my suitcase at mums (accidentally) so couldn't sort my washing out.

Saturday morning we popped to Crossgates to the bank and then got back to mums for about 1. It is very hot and Dad's urine is looking really dark - not sure if it's the heat?

At about 4, Roy and I took Emily to Crosby to see the iron men - Anthony Gormley's "Another Place" art installation. It's quite impressive! I couldn't believe that people were actually paddling and swimming in the sea at Crosby - it's filthy! With brown scum on the tide. I also learned today that Liverpudlian guys still call each other "lad" - I've been away so long, the accent sounds really strong and sometimes quite alien to me now.

We walked for ages along the beach and then had to practically sprint back along the prom as we'd promised mum we'd be back (complete with chinese takeaway) by 6.30-ish. As it turned out we got back at just after 7. Not too bad! After eating, we decided that Emily would stay at Mum's rather than come back to Maureen's with Roy and I. So I set her bed up, did Dad's arms and then Roy and I left at 11-ish.

http://www.antonygormley.com/newsite/viewproject.php?projectid=13&page=2

I was a bit miffed with the carers on Saturday evening. They told Dad that they couldn't do his elbows or foot anymore as they aren't allowed to do bandages. It's hardly bandaging - all we do is wrap some soft cotton round the parts of him that are getting sore rubbing on bed clothes. I think I was more annoyed that they didn't tell us too. Ah well - as I said to Dad, he'll probably find that some of them will do it - it's just the real jobsworths who won't. I know they have rules to follow, but these aren't bandages over wounds. (Yet.)

Sunday morning we got back to Mums at 9 and she wasn't looking very happy at all. I thought she was just a bit low - she said she felt a bit upset, but nothing in particular had happened to cause it. So after Emily got up I decided to take her out for an hour. We'd had a chat last night about some bullying she's experiencing at school and I wanted another conversation with her just to get some more info and start her thinking about ideas on how she could tackle it (I need to talk all of this over with Lorraine).

As I left mum's, Colin and Dot - good friends of my parents - had just arrived. When I popped back half an hour later, Len and Angie (mum's cousin and his daughter) were there, too. And then Lisa (Neil's partner) and their three children arrived. I could see mum's face - the flat was jam packed with people and she didn't look at all well... at this point I thought it was tiredness and the heat affecting her. So I quickly dragged all the kids out and we went to Sherdley Park for an hour. I haven't been there for years! It hasn't changed. It's a great park for kids as there is a little animal section as well as the usual swings and stuff.

The kids were all great fun.... they all buzz off each other and they love to see Emily. I must make an effort to take all four of them out in the summer holidays. After they'd run off some steam in the play area, we got ice creams and walked round the animals. They all loved it... there is a very strange assortment of animals there - wallabies, peacocks, pigs, sheep!

It was funny hearing them in the car - Bethany was saying that Grandad (my dad) used to always take them out but he can't now that he's poorly. Emily was agreeing with her and saying "Oh but he's in good spirits though, isn't he?". It's so funny to hear them repeating what they pick up from adults. Emily had been chatting yesterday about all the places her Grandad has taken her to - she has a fantastic memory - and she said he was always "dead interesting" as he took her round places he grew up, etc, and always took the long way home from places if they went visiting relatives, to make it more fun.

Jack told me in the park that next time, Roy could bring them on his own. And then after that, Grandad could. How do you tell a 9 year old that his Great Big Grandad won't be doing that again?

We all piled back in the car, hot and tired, and headed back to mums. By 2.30pm everybody had gone - I think mum was glad to see the back of us all! Roy and I were home by 4pm, after a quick trip to Sainsburys for food (more salad stuff!). When I spoke to mum later on, she said her throat is really sore and her glands are up - so Lorraine is going to stay late tonight until Dad is settled to let mum get a good sleep.

And there it is - another weekend over. And a new week begins tomorrow. Who knows what it will hold.

A down day

Well, my jubilation at Dad moving his alarm clock to 6.30am instead of 5am was shortlived. He settled down to sleep at 10.30pm and was awake needing help with various things at:
3am (he was sick)
5am (he thought somebody was at the front door)
6.30am (he was shouting out - he was dreaming the carers were in with him)
and finally at 8am (when he claimed to have been calling since 7am).

Mum did the first two "calls" and I took the later two. Problem is, we both are actually awake whenever the other is up with Dad, so the sleep gets interrupted anyway.
I felt guilty at 5am cos I popped my head in to his room (en route to the loo) to see what exactly he had mum doing for him. He caught sight of me and said "Oh - do you want to do my ears?" (referring to the warm olive oil we're dropping in to loosen his ear wax). Mum looked at me and said yes, and instead of declining gracefully I snapped "He's not having routine stuff like his ears done in the middle of the night". I felt so bad later... he asked me again at 6.30am and then said "only if you're not too tired".

Soooo... pretty tired today! I was going to Tesco for mum's food shopping and made the mistake of "popping in" to Ikea on the way. You don't just pop in to Ikea though - it's at least a 4 mile hike from entrance to exit!!! Ah well, got what I wanted so that's the main thing.

Dad seems down today. I came back from my 4 hour shopping trip and walked in to his room. I asked him if he was ok. "No". He's cut his finger on the hoist while pulling himself over, and its really sore. Also, he's fed up of his hearing playing up. I said that he looked tired today. "I am".

Poor Dad. I suppose its inevitable we'll have days like this after a good day like yesterday. He's not really been in the mood to chat so we've kept it functional. He wasn't even in the mood for chat with the Doc or Carers. Dr Rathbone has reduced some of his diuretics as she doesn't want him to get dehydrated now it is warmer (plus he doesn't seem to be retaining fluid). She also said those meds are weight - related and they estimate he's down to 11stone now (from 18.5 stone in January???). That is over a 100lbs weight loss in 4 months. I don't think he's that light yet.... maybe 12 or 13 stone?

I feel bad about something from last night. Mum came in and said that between them they'd managed to drop Dad's sputum pot on the carpet and it had emptied out. I knew she'd struggle to clear it up (bending isn't easy for her and I doubt she relished doing it anyway) but my offer to help was pretty half hearted. I can handle toileting stuff, and blood. Even the pressure sore wound and vomiting (just about) but the sputum pot fills me with horror. I avoid it like the plague. So there is my confession for the week. Sorry mum, I should have got up and done it for you.

On the topic of Mum - I think I may have mentioned how disorganised she is! She has a habit of walking around the flat with things and just randomly leaving them where they don't belong. This often results in many minutes spent searching for stuff - the remote controls for the TV and DVD players usually (there are 4 of these!!!). She also has a way of starting one job and then moving on to another without ever finishing the first, so we follow her round and guess what she was about to do and then just do it for her anyway! And finally, she causes herself a huge amount of work by never, ever putting things away after using them... even when she's next to the place where they belong. Even to the point of not closing drawers behind her (when she does this in Dad's room it drives him potty!). It's like she gets within an inch of where she needs to be and then gets distracted and wanders off.

Anyway, to assist with the problem of missing remote controls, we got mum a pouch thing that you put over your armchair to hold the remotes. Just think Mum, we said, how wonderful it will be when the remotes are always where you put them - in the pouch. How much time and leg wear you'll save. Yes, she totally brought into this fantastic idea, and we spent hours trying to encourage her to use the damn thing. I went home one Friday and when I got back on the Monday the pouch was nowhere to be seen. I confronted Mum to be met with 101 different reasons why it wasn't suitable (kept slipping down the chair, pockets in it too shallow.....). So, once again I failed in my mission to get mum organised.

Today in Tesco I spotted Gardeners Tool Belts - wow, I thought, a remote control pouch for round the waist! I had to buy one... Mum was quite taken with it, even though I'd only brought it in for a laugh. She walked round with it on for, oh at least 10 minutes.

I promised a list of our daily routine - I'm still working on it.
In addition, I think I'll do a list of all the medical paraphenalia that has invaded my parents house..... we spend hours each week doing inventories of it all so we can make sure we have ample supplies of important items. So, I'll put it on my list of things to do.

Popped to Lorraine's tonight to look at her new frock (she has a summer ball at the weekend) which is gorgeous. Then back here for a shower before watching Big Brother. And now it is 12.30am and I am waiting for Dad to tell me he's ready to settle. He did warn me it might be after 1am.... after his restless night last night he's determined not to go to sleep too early tonight.

So, at quarter to one I started to wash Dad's arms (which get itchy and need washing and ointment putting on) and his head. We have a new routine! Because of the soreness of Dad's skin, we have constructed these "elbow pads" out of cut up cotton vests - apparently just the thing for sore skin. We'd been taping them round Dad's arm but tonight we discovered some very light stretchy tubular bandaging that fits over them just nicely, and keeps them in place. Hopefully they'll hold over night.

Meeting new people

Mum did Dad's early "shift" today (the up at 5 to wake him so he doesn't sleep too heavy routine) but I still woke up and heard them anyway. Then at 7-ish they were talking and every other word seemed to be "Jan" so I got up to see if I was needed to something. Apparently it was Dad trying to get mum to go back to bed for an hour or so, and let me see to his tablets, ear drops etc.

Fine by me, but mum stayed up anyway. It's amazing how long it can take to run through the daily routine stuff. I must list them out one day (those who know my love of lists will understand why I would want to do this).

I picked Dad's papers up and then headed out to meet a cyber friend I met on the Pancreatic Cancer UK website. She lives in Canada but is back in the UK caring for her mum who has PC. Funny thing is, as we were exchanging messages on a PC Forum, we realised we were both in the same (small) town at the moment! So we're meeting up for a coffee. I was telling my dad earlier and we ended up having a very confused conversation! I told him I was meeting a lady I met online, and he thought I meant Lady! He starting asking me whether she had inherited her title and if she was a down to earth or a bit la-di-dah!!! I think we ended up back on track.

So I had a nice lunch with Barb and then popped to the shops to pick up some stuff for tonight. It's "Big Shop" day tomorrow.

This afternoon, Lorraine and I spent a pleasant couple of hours in with Dad looking through all the family photograph albums. We found some really funny ones and some of Dad's mum and grandma. When he was looking at the picture of his gran he was telling me how she was a lovely lady, and then he looked at the photo and said "You're a lovely lady".

Later on, I did Dad's arms for him (they do itch and it soothes them if I wash them after his dinner) and I also washed his head, as he says he keeps forgetting to ask the carers to do it. I think he's just scared, as one of them cut his head twice with a bracelet a few weeks ago. So I did his head too (well, just the bald patch). I apply lotion to Dad's skin using a firm patting motion, and he was very impressed with how warm my hands were - he say's I should start a Reiki/Healing practice! I was highly flattered by this. We had a chat about how much we've all learned in the last four months - not only about how to do stuff, but about ourselves as people. He asked if I'd offered my services as a carer to my in-laws if they should ever need them!

Dad's still talking as if he's going to be here for a long time yet (6-9 months was mentioned at one stage) and was even telling me how he's increasing his food intake a little each day. He did eat well today (compared to some). Maybe he's in training for his Christmas Dinner!

We've had some fun today - just bantering and reminiscing and stuff.

Christmas Cheer?

I'm baffled. Today, Dad has mentioned Christmas about 6 or 7 times. Mainly in relation to Christmas Dinner. He keeps talking about what he would like to eat - a small portion of turkey, veg, potato and gravy. How Roy's parents would have to come over here this year, but there should be room for us all. How he's hoping that if he's still here he'll be able to eat a Christmas Dinner.

Mum asked him if he wanted to try a small roast dinner - but he just said "At Christmas, yes".!!!
What is meaning of this? I am sure there must be a message behind it for us. We wonder if Dad would like some kind of family gathering before he passes. We're thinking of doing something on Father's Day.

More black humour content: Mum says if Dad lasts until Christmas, then he'll have seen the rest of us off by then!!

We were discussing today how mentally draining being a caregiver is (it's also physically draining for mum, too). Every day I thank my lucky stars that there are three of us plus the Home Care team and Nurses doing this. So many people are alone and trying to cope.

Dad was happy to see his three mates - Richie, Philly and George today. He seemed anxious to know what they'd said about him - how he looked, how he seemed etc. I said they think he's doing really well. He thinks they were more relaxed with him than on their first visit to him since he's been home.

Mum and Dad argue incessantly about the most ridiculous things! Today I mediated in three quarrels -
- how we can get the towels soft enough for Dad's sensitive skin
- how to get three visitor chairs in his room without moving his bed (answer: it can't be done)
- how many glasses of water Dad is allowed on his bedside table for over night. He wanted 3, mum only wanted him to have two. I've given him three. I won't argue with him, and if he knocks one, then it's only water.
I try to tell mum that we have to remember that Dad lives in a very small world at the moment and therefore these things can escalate to major rows with him if we don't back down (or be seen to back down) a little bit. She doesn't really seem to want to give way. Her choice - and I guess that's how they've always been so.....
Problem is, sometimes they are just at crossed wires and then if I step in and Dad gives way, Mum gets upset cos he'll listen to me but not her. Ah well, these things are sent to try us.

Dad told mum tonight that he'll come for her when he's got things all sorted out in heaven. I think she must have looked a bit panicked because he then added "Not for another 15 years or so - unless your knees go and you can't cope, and then I'll come and get you sooner".
He is so funny.... unwittingly so, sometimes.

He had also told her that he might start feeling a bit frisky if he carries on "feeling better", LOL! At that, she did panic and almost ran out of his room (only kidding). Then I walked in and he said "not in front of the girls"!

Dad is now eating very little. Today he's had:
5 spoons of porridge (he was very specific when ordering this)
Half a cup of tomato soup
Half a tub of strawberry mousse
A 2" piece of smoked haddock, mixed with butter and a poached egg yolk.
How he's keeping going on that I don't know.

Roy's parents go to Ibiza tomorrow for a week's holiday.

I had some sad news yesterday from my friend Lynn - she lost her father a month ago. We're going to meet up next week for dinner.

Time for bed. My mattress awaits.......

Back "Home"

It feels good to be back and Mum and Dads. I feel more settled here because I have stuff to do and it keeps me occupied. I also feel somehow calmer about the whole situation when I am around Dad. I also found out that Mum hadn't coped too well at the weekend and got over-tired with it all.

Dad had changed in the week since I'd seen him - in that he is thinner, his face looks smaller. His eyes aren't quite as bright, and he just isn't as sharp as a week ago. He gets a tiny bit muddled over some things now. Other than that, he was on good form, chatting away, wanting his ear, eyebrow and nasal hair trimming. I seem to have acquired the job of barber as well as nutritionalist. Lorraine does manicures, pedicures and poo.

I arrived just before the Doctor's first visit for the week. She had a chat to dad about his various symptoms and their management - currently, these are:
- Dry mouth and lips (solved by gel based saliva substitute and vaseline)
- Bruised, red and splitting skin (possibly to be solved by lowering the clexane dose)
- The pressure sores (this is just part of the daily routine now - re-dress and pack, oramorph for any discomfort caused)
- Vomiting on rising (and occasionally at other times)
- Thrush in mouth (solved by Nystatin and if that doesn't work, Fluconazole)
- Pain in shoulder blades (we think this is pressure when lying a certain way)
- Sensitive and itchy skin (I now wash Dad's arms every afternoon and put Sudocrem on to relieve this, and we've stopped using scented shower gel/soap).
- Occasional Deafness (solved by putting warm olive oil in Dad's left ear a few times each day)
I think that these were the main talking points today.

As Dr Rathbone was leaving I gave her a copy of the Final Gifts book that we'd told her about. Dad wanted to know what it was, and I said it was the book that mum had told him about - one which was reassuring about death - how it happens etc. Dad promised Dr Rathbone that once he'd had chance to properly check heaven out, he'd come back down and tell her what it was like. I think he likes to send her on his way with a giggle.....

A lot of the carers comment on how pleasant it is to come to look after Dad... they think he's lovely, and he is of course. We hear them chatting and laughing in his room with him - sometimes it's like there is a party going on in there!

Later today, I was talking to Dad about his shoulder pain and he was struggling to find the words "Shoulder blade".... so he said "that bit where my wings will go when I go up to heaven". He is still making me laugh, too. I also noted that he is still doing his musical coughing, where he'll end each cough with a little "tune". Oh, and he is still obsessed with his bowel movements.
We're almost at the stage where he's got the nurse and carers weighing his output. :-)

And finally, Dad is still keen to know that he looks ok - mainly because he's been inviting visitors again. He says he wants to see "the lads", Stella and Ann in the next two weeks, before he starts "looking awful". He doesn't think it's nice for people to visit a cancer patient once they're all gaunt.

Warning - black humour content in the final sentence of today's blog.

It's June. Which means that I am not the winner of the "When will Dad Die" Sweepstakes. My prediction had been May. So maybe Lorraine has got it right - she had July in her mind.

This isn't at all because I wanted Dad to die in May, it's just the sort of timeframe I had in mind seeing how he was on leaving hospital.

The weekend - after a week "off sick".

My face is still swollen and sore, but the pain is now more of a twinge.

I'm banned from going over to mums. She and Dad have told me they want me to stay here and get properly well. So, I think I will follow orders. To be honest, if I'd woken yesterday totally well and pain free I'd have gone over there, but I still felt a wee bit off colour. We're not going out this weekend, either, so will have a quiet time in with Roy.
Mum says that they are ok... but Dad is starting to throw up in the evening now, too. Mum had an appointment at the hospital with a skin specialist about her foot - he basically said she was seeing the wrong guy and he couldn't help her. What a waste of time - she'd waited ages there, too.

I was checking through the contents of the freezer and thinking up meals I can make out of them! I'm pretty much still on soft food, so I guess rump steak is out of the question! I found some frozen mango, though - so made a nice smoothie with that.

I found out yesterday that I can't drink alcohol with the antibiotics I'm taking. Boo hiss.. just fancied a small glass of red wine with dinner. Ah well, the worse that can come of this week is that I lose a few pounds....

I am also supposed to be studying! I've got a financial services exam to do (not a biggie - total of 20 hours study). Although the longer I am away from work, the less I want to

a) ever work again

b) work in financial services

I was interviewed late last year and again in January by a firm in Preston who promised me a job offer and then appointed somebody else. They were a bit shabby about how they did it.

I think I mentioned that I met the girl a few weeks ago at the Mortgage Expo I attended.

Anyhoo... my old work mate met her last week at a conference. He's so fiercely loyal! This is what he said in an email to me today:

Met that XX last week in XX - god knows why they picked her. She is so dippy and was dressed like she was going to a wedding.She said that she saw you talking to various people in Manchester but didn't introduce her self as she had taken your job and beaten you in the race !!!!!

I took an instant dislike and told her that you weren't able to take the role even if offered due to personal family commitments. And that you wouldn't need to work for a very long time due to huge compensation from XX. And that her company couldn't afford you anyway. AND you needed a more expansive strategic role rather than an operational one !!!!!!

Then she asked (deleted next bit as it relates to some commercial deal the two companies are trying to do, which isn't going well).She went of in a huff and said Xx (her boss) wont be happy !!!!!! lol We were burstingwith laughter. She's horrid.

I know this is catty but it made me giggle today! Hmmm, I bet she's also using the draft business plan that I presented to her MD too.

Like I said, not much on the agenda this weekend. I'll keep taking the tablets!
They're giving out tickets for the Opera in The Park event today - but I don't feel like going into Leeds for them. I'll take a chance that there will still be some left next week. Bit annoying really, as my SIL2B is in town every Saturday morning. When I asked her if she was going today, and could she pick up any tickets (I used to do about 4 separate trips as they only allow 4 tickets per person, per time) she just said "not for long" and that she'd see if her friend could get any. Grrr. Help me out, why don't you! Every flipping year I organise this and on the one year I'm not around to nip in and out of Leeds for them I get no help from anybody else. So I'm going on strike. Rant over.

A quiet Sunday. Had a walk in Roundhay Park earlier - round the lake - and then came home to do some cooking and just mooch about. Have felt pretty low all weekend - a consequence of sitting about at home for a week, I think. My brain feels scrambled.... I need to get back to Mum's which at the moment is my "normality".

So much to catch up on - the last week!

Where to start?
This is my first blog for over a week... I was trying to keep regular blogs but sometimes the days just run past and I've forgotten! So, I'm being lazy and collating all of last week into one post.

24/5

Well the latest drama in the life of my family is that my niece has been taken to A&E in the last half hour with suspected appendicitis! She's been complaining of tummy pains for a while and to be honest it got a little bit like the boy who cried wolf... anyhoo she was up all night and my sis took her to the docs this morning and he recommended taking her straight to hospital. So we will have to wait and see...Of course, this means that my sister's chances of going to the Elton John concert are looking remote now.
My mum's back and vein are ok at the moment. But her left arm, shoulder and hand have flared up (arthritis) so once again this week she has limited mobility. The joys of arthritis. Her hand and arm are red and swollen.


25/5
My niece was kept in hospital over night, we're still not sure what the problem is but they're not convinced of appendicitis as the pain is on both sides and higher up in her tummy. They are doing an x-ray this morning I think and possibly a scan to check her ovaries. However, I've had a text from my sister to say she's coming home - apparently they gave her something to clear her bowels out and she did (and was then sick). So I am wondering if she's had some kind of blockage? Bit tricky as I am mainly communicating by text and can't get details!! I was going to pop along and visit but she texted me to say don't, she'll phone when they get home.
Sooooo.... of course, that meant that my sis and her hubby couldn't go to the Elton John concert last night. I ended up going with my nephew, Joe who is 18. The concert was good - Elton basically just sits at his piano and sings/plays for over 2 hours. No messing about and no interval.

So we got home at about 1am (concert was about 2 hours from here) and then I was up at 5 with Dad (long story, but he sets his alarm for 5am now, details will be on the blog). Then I had to call out the District Nurse as Dad had some probs with his catheter, so got back to bed at 6am and zonked until nearly 9!

One thing I am NOT good at coping with is lack of sleep. I need to get better at that! Any less than 8 hours and I'm rubbish.

Hopefully I'll be heading home later to welcome Roy back from Scotland.... he seems to have enjoyed himself.

Update: My niece is back home. Faecal impaction was finally diagnosed after she confessed to the doc that she hadn't been going to the loo properly. Anyway she's fine and on medication to clear her system out. She still has a little bit of tummy pain but now they know the cause there is no panic.........

27/5
We've come over to see Mum and Dad today. Roy and I are staying the night at Maureens.

Dad is ok. Very chatty. Wants company all the time lately, which is nice. He commandeered Roy all afternoon to watch golf with him.

Mum isn't so good again - tired, shaky and tummy a bit off. Maybe a bug? I am fearful that all this is getting to her a bit. We'll see. At least I'm here most of the time to keep an eye on her.

28/5
Here's the bad news folks - I have toothache. Is there anything more misery-making in the world?? (Can't you tell I've never given birth?!). I'm back home now, and popping painkillers whilst catching up on tv progs I recorded. My sister in law rang me last night about 20 minutes before the end of Lost! Who on earth phones people at 11.30pm? By the time I got rid of her (shame on me she's lovely but I think she'd had wine with and after dinner and she was yapping on) then I had missed the end! Just caught up on it now.

Roy found my dad to be on very good form, but noticed how much weight he's lost since he last saw him. Because we see him every day, it isn't so dramatic. Dad was asking me today did his face look really thin. I offered him a mirror (he really doesn't look awful at the moment) but he declined and pointed to a photo of himself on holiday in California. "I'd rather remember my face like that". Brown and with some weight on it. I did tell him he looked lovely now - and that he looked younger. He told me off - he said he never had many wrinkles anyway Can't win, can you!! I like that he's still a little bit vain, though. I trim his eyebrows and ear/nose hair and stuff for him, and my sister does his nails.

Dad has started to be sick again on waking - that funny brown stuff. But he says he doesn't mind because it doesn't make him feel awful, like it used to when he was sick. This, he says, feels more like a clearing out than some kind of awful retching sickness. He likes to get this out of the way early, before pill taking and breakfast.

29/5
Oh my mouth hurts so badly. The strongest painkillers I had won't even shift it. Dentist will see me at 11.15am. I hope he can sort it out.
Dentist says I have an infection in my root canal which is covered by a crown. So he's put me on two types of high dose antibiotic. Unfortunately I just can't shift the pain - now is the first time I've felt vaguely human all day (after having a hot bath).

30/5
I am still in horrendous pain with the tooth.. that's 48 hours solid now. Just spoke to my GP who has prescribed me some anti-inflammatories (diclofenac) to take alongside the codeine based pain killers I've been using (which weren't really doing anything). I need to get this sorted and get back over to help my mum. Just waiting for Roy to pick my prescription up - he's off work today, his stoopid boss seems to have decided to extend his bank holiday until tomorrow.

Update - Roy's boss has decided to make it a week off. I'm fuming - that's nearly 2 weeks Roy has been off now and we need his income coming in really.

31/5
I am finally getting some relief from the toothache! My face is swollen and I have a lump on my gum so hopefully this is a sign that the infection is working its way out. What a horrible two days... I was so miserable, I just slept and grunted at Roy in between sleeps!!
I felt very sick yesterday but I was probably toxic due to all the painkillers I'd taken. Mum is insisting I stay home all week but I'll see how I am tomorrow and maybe pop over then. Today I still have pain but at least the tablets are working on it now.

Getting used to "Sick Dad"

I'm getting very attached to "Sick Dad". I know that sounds daft, because my Dad is still my Dad, but different.

Sick Dad shares the same characteristics as Well Dad, but some things have changed.

Well Dad never had the highest of tolerance levels, but Sick Dad will not tolerate anything he doesn't like! For example, he will make us call out the District Nurses or Doctor if he is at all bothered by something. And he gets very annoyed at me for putting things off. Just the other day I got a rollicking for what he described as "a classic example of not doing things straight away". My crime - I had delayed going to collect the pensions for a couple of days. He got really agitated about it and told me off.. I felt like a little girl, LOL! Just months ago I'd have argued back, but I just took it on the chin. Lorraine was in the room and grinning at me with that "you're in trouble, na na" look that she had as a child!

Sick Dad also has a number of little procedures that we have to follow. Such as putting medical tape over his catheter to secure it and stop it pulling on him during the day. He's very particular about how the tape is applied! And setting his alarm clock for 5am every day. Woebetide us if we attempt to wriggle out of said procedures!

I also see his mind ticking over all the time. Like he's a little boy trying to work things out and looking for the answers. And he does experiments (with his bed settings, food and medications etc) to see if he can make things better for himself. He likes to discuss these experiments with the Doctor and he thinks she appreciates the fact he's working it out for himself. I'm sure she does - her little face breaks into a grin when he starts to tell her about his latest experiment.

One thing that Sick Dad claims to be is more tolerant of mum! They've always squabbled (over the stupidest of things) and he says that he won't take her on anymore. She will still argue back with him if she thinks he's wrong. He's told me that he now just lets it go. Hmm, I'm not too sure on that one!

Sick Dad is also obsessed with checking his body for signs of breaking down. He checks his arms every morning and is always asking does he look different, facially. He asked Roy, mum and I all in the space of a few days last week. He was particularly interested in Roy's comments as he hadn't seen him for a month. He also was joking last week that Victoria Beckham would be jealous of his arms!

Dad was saying to mum last week that "maybe one afternoon, next week, or the week after, then I'll just fall asleep and not wake up. Wouldn't that be lovely?". Of course, mum had to agree with him that yes, it would be a nice way to go. I hope he does, when the time comes. He says he doesn't mind, as long as he's comfortable and with his family. I take that as a sign that we'll be with Dad when he passes. Another new experience ahead..... I was rather hoping he'd be the type to wait until I'd left the room!! (Apparently some people do that, if they feel their loved ones won't cope well with watching them die.) Although part of me thinks that it will be better for me if I am with Dad when it happens. Can't think about it too much..........

The longer this goes on - the more I will miss my Sick Dad as much as I'll miss my Well Dad. That probably sounds very odd, but I know what I mean. (I think.)

Wednesday 23rd May

So, the good news is that the Buccastem have worked and Dad has stopped throwing up now. Which is just as well as he had reduced the amount he eats - won't take the Fortisip at all - and so he needs to hang onto those calories.


On the topic of calories, I joined the gym and went for a swim on Tuesday..... it's quite a nice pool. I've already left two towels in the changing room! Hopefully somebody will have handed them in.


Mum isn't so clever - her left shoulder, arm and hand are really painful (arthritis) and her hand is now swollen. She can't do much about this other than not use them and trigger even more pain.


My dad was funny last night - he has started reading a lot again (he loves James Patterson books) and he found £30 worth of vouchers in his wallet which were given to him as a Christmas gift by my brother and his partner. So he deliberated for an hour and a half about whether to spend the money on books (there is a new Patterson out) or whether to give them back to Neil for the kids. I said to him that they were his pressy so he should buy himself books .

Then he says "What if I buy 3 books and don't last long enough to finish them?". He was laughing at the time and I just told him not to be worrying about stuff like that - I said we'd read them for him! Mum suggested he buy them one at a time! He then said that the way he is feeling at the moment, he thinks he will finish the books. I tend to agree with him there... he really is doing well, despite not eating much! And he still has his humour.

He told me that he "almost said something inappropriate to Mum" last night. I wondered what on earth he was going to come out with - but it turned out he'd been thinking about the way that some families bury treasured possessions with their loved ones. So he'd been racking his brains trying to think of something he could take with him. But as he pointed out, he and mum don't really have jewelry or stuff like that. So, he'd decided on a pair of Tracksuit bottoms bought for him by mum's best friend, Joan Fearon. They were the closest thing to Mum he could think of! But the punchline was that he then remembered he's being cremated and so decided against the idea altogether..... I did have to laugh. He then offered the tracky bottoms to me - as I'd mentioned earlier that I'd taken a pair of fleecy jogging bottoms out of his wardrobe to wear, back in February when it was cold! (I told him this cos my dad likes to think of things being re-cycled and he hates waste!!).

Dad is getting bothered about sleeping too long. He's never been one for long sleeps - usually 5-6 hours through his working life - and when he sleeps 8 hours solid (as he has been lately) he wakes up groggy and dry-mouthed. Last night he decided to stay up late so as not to sleep to long. But then, at midnight, he had a change of plan. He decided to set his alarm clock for 5am, so that he could wake up, have a drink and then just doze until 7 or so. So I was up at 2 (just to check he was ok) and then the alarm went at 5. When I went in to switch it off, Dad was fine, and just wanted to doze a while. He said he felt much better when he woke properly at 7. So I expect this will become the "routine". Better than him falling asleep with headphones on while watching tv, I guess!

So today is Wednesday and all has been fairly quiet. Dad is having a lot of pain tonight in his right buttock - I think this is related to pressure sores and nothing else, but I might mention it to the nurse tomorrow. Today, Dr Tseung has been out and said that Dad seems pretty well. I noticed yesterday, when I was cleaning some spillage from his stoma bag up, that his tummy above the navel is rock hard... I wonder if that is fluid or something else?

Earlier today I took mum to see the Retirement Flats in Farnworth village. She loved them. We have put a temporary hold on flat 44, while we try to sort out the timing and funding issues we have at the moment. I really hope this works out - the flat and the location will be perfect for mum on her own. The sales lady understands our situation and is being as helpful as possible.

http://www.mccarthyandstone.co.uk/index.php?Itemid=27&id=735&option=com_content&task=view

Liverpool were just beaten in the UEFA Cup, so that wasn't great! Dad didn't end up watching the match... he watched a DVD instead.

It's the weekend again!

Saturday I cleaned my house! First time in a long while it's had a really good clean from me (Roy has been doing it in my absence!). Evening we tried the new Italian in Halton (Piccolo) and it was rubbish! Packet sauce and frozen pizza base. Yuk!



Sunday morning we took a walk down to Temple Newsam to check out the rhododendrum walk. Was very pretty. Also went into the bluebell woods but the bluebells are dying off now.

Lovely purple, white and pink rhodedendrum cover the pathways and are scattered around in the woods at Temple Newsam House. Last year they did some serious pruning back of the bushes so the display didn't seem quite as spectacular as it has done. Still very beautiful though.

We were also in Matalan on Sunday because Roy is off on a golfing trip to Scotland this week (Mon-Fri) with his brother and 13 other guys. We found out last night that he needed to wear polo shirts at the golf club and also needed some more suitable trousers. So we got him a load of stuff at Matalan (1 pair long trousers, 2 pairs smart short, 3 tops and a baseball hat) all for about £60! I'm so glad he's getting a break, I know that me being away all week was starting to get him down but he won't ever moan about it. And he wouldn't change anything. It is how it is and we will manage fine, but I think the time away will be good for him.

Later on Roy cheerfully announced that he won't miss me next week! Because he'll be on his hols! Good.

So, next Thursday we had tickets for an Elton John concert (my Xmas present to Roy) but seeing that he's now away, I have donated them to my sister and her husband and told them to stay overnight at our house (the concert is nearer to here than her place). It will do her good - she hasn't had a break since Dad was ill, and her hubby is off work next week so I thought it would be nice for them to have some time together.

At least when I come home at weekends I am totally away from things and can relax a bit. My sister lives 2 minutes drive from mum's house and so keeps "popping back" all the time (evenings, weekends). So I am conscious that she could also do with some time out.

In June we're going to London to see the Sound of Music at the Palladium Theatre. I am going with my sister and my niece (my Christmas/B'day present for my niece). Can't wait!

Poor mum gets no respite from home - in fact, she hardly even goes out now because of her foot.
I was investigating gym prices - there is a gym near mum which is very reasonable, only £26 a month for an off peak membership. So I'm thinking I should get down there and sign up - there is only a small joining fee (£25) so when I am back home, I won't have lost anything. My local gym near home was good enough to suspend my membership and fees while Dad is ill.

(Yes - you guessed it, I'm feeling fat!!!)

"Things are just getting worse...."

Ahh.. I am writing this up retrospectively as I just did some notes in draft form and now I'm trying to fill in the gaps.


We didn't have a good night last night with Dad. He was up at ten to six (still feeling a bit hot) and so I offered him paracetomol... as soon as he took them he threw up again.

About 7-ish (after I'd gone back to bed) I heard mum in his room talking to him. He was telling her about a dream he'd had, which had unsettled him. He'd mentioned it to me but I wasn't really thinking much of it, but it clearly had got to him. He asked mum to stay with him and hold his hand. She sat in there for over 2 hours! She said everytime she felt he'd gone to sleep, she would gently move her hand away and he'd grip it back, quickly. I guess he was just feeling that way out, which isn't like my dad.

So, mum came in to my room about 9 and I was still dozing (hadn't gone to bed until late, and been up a few times). Felt really lazy!

Dad's dream had been something to do with people waiting for him to cook them food - burgers, poached eggs, roast beef and yorkshire lamb (sic). And at the same time he was trying to find them rooms somewhere. Strange.... he said later that he didn't know why he was worrying about other people all the time!

Went to do mum's shopping late morning and then planned to head off home mid-afternoon. Paul, the District Nurse came about 2-ish so I stayed to help him. For the first time, I actually saw Dad's wound site from his pressure sore (without any dressings). It was horrendous. I had heard how deep it was, but still shocked when I saw it. I could get my fist in there, easily.
Paul asked was I used to it - I told him no, never seen it before in all it's glory. No wonder he's in pain when he moves round the bed.

Paul tested Dad's urine and it was clear of infection. Mind you he wasn't as sweaty or shaky today so maybe it was just a one off.

So, the plan to head home early was scuppered slightly when Dad started throwing up again - he'd had some painkillers after the Nurse had finished. I stayed in with him (he asked if I didn't like it, cos I stayed at the end of the bed!) and Lorraine phoned the Macmillan Nurse to see if there were any drugs he could try other than the Stemetil (which made him gag and balk when he tried to take them). Before long, Macmillan had phoned back to say that Dr Tseung was on the premises (they're based at Halton Haven Hospice) and he'd prescribed Buccastem. This tablet is placed between the lip and the gum and doesn't need swallowing. So we'll give that a try.

After being sick again Dad had a little moan that "Things are just getting worse". Bless him, I couldn't help but think that they aren't ever going to get better for him, are they? He said he didn't know what his body was trying to tell him :- vomiting, bleeding from his stomach (this is slightly dramatic on Dad's part as it was only a little nick from the injection!) and
Dad decided he shouldn't eat again if he was going to keep being sick - let's hope these tablets work!

Left mum's before 4. Home just after 5 as the traffic was pretty light. I'd promised Roy I'd try to get to the Doctors with him as he'd had some blood tests taken (feeling tired and crappy all the time) and his results were back. As I parked up outside the Docs, he came walking round the corner. We got straight into see Dr Grewel - a really nice man. He ran through all the tests and confirmed that everything was normal. But he didn't just leave it there... he wanted to chat to Roy about his sleep patterns, when he felt tired, all sorts of detail. I decided to mention our personal situation - that I'm away all week. At this point I saw the lightbulb go on in the Doc's head! He quickly caught onto this and after some more probing (mental not physical!) he and Roy agreed that Roy was probably just feeling a bit low because of that. Doc's words "You're just going through a tricky patch, and you're there for each other and will get through it. Don't ask me for tablets for this, because I won't give them".

He also declared that Roy was probably a "bit depressed". But on the assessment scale, which is 1-14, Roy scored a 1! Roy was delighted not to have anything physically wrong, but we had a really good chat about how he's going to occupy himself better while I'm away.... he probably needs to put a bit more structure around his week as it looks like I could be away for a while yet.
So I am really glad I got back in time for that appointment.

I watched Notes on a Scandal the other night. Liked it - I'd read the book so was interested to see how it would translate to film. I think the good acting helped it a lot. We were in Matalan because Roy is off on a golfing trip to Scotland this week (Mon-Fri) with his brother and 13 other guys. We found out last night that he needed to wear polo shirts at the golf club and also needed some more suitable trousers. So we got him a load of stuff at Matalan (1 pair long trousers, 2 pairs smart short, 3 tops and a baseball hat) all for about £60!I'm glad he's getting a break, I think me being away all week is starting to get him down but he won't ever moan about it. So, next Thursday we had tickets for an Elton John concert (my Xmas present to Roy!) but seeing that he's now away, I have donated them to my sister and her husband and told them to stay overnight at our house (the concert is nearer to here than her place). It will do her good - she hasn't had a break since Dad was ill, and her hubby is off work next week so I thought it would be nice for them to have some time together. At least when I come home at weekends I am totally away from things and can relax a bit. My sister lives 2 minutes drive from mum's house and so keeps "popping back" all the time (evenings, weekends). In June we're going to London to see the Sound of Music at the Palladium Theatre. I am going with my sister and my niece (my Christmas/B'day present for my niece!). Can't wait!

Big Day Out

I was out at a work-y type thing yesterday! There was a Mortgage Expo in Manchester and so I decided to show my face and do a bit of networking (or schmoozing, more like!!). I don't want people to think I've disappeared completely - so that when I am ready to go back to the work place, I can pick the phone up to some of them and see what they know.

My old team at Pru had an exhibition stand at the event and so I hung out with them for a while. It was weird at one point - they'd all disappeared and the last remaining guy asked me if I'd "mind the stand" while he went to collect something, LOL! I was praying nobody would visit us and ask me anything!! So I saw everybody who I wanted to see, which was good.

The picture on the right shows David and Mark on the Pru Stand, checking messages on their Blackberries. Do I miss my Blackberry buzzing every 2 minutes? Like hell I do.

I also met the girl who got the job with the firm at Preston who I was talking to earlier in the year... don't know if you remember that but they virtually promised me a job and then took somebody else on. I told my sister - "she was old, fat and had long scraggy blonde hair". My sister's reply - "A bit like you, then". I had to admit I'd walked right into that one. (See what I have to put up with all day )

A few people told me to let them know when I'm looking for work again, so that was good. Felt a bit weird being back in my suit and at a work related event. I sat in on one of the seminars in the morning and I was bored rigid! So I didn't go to any others.

My mum is ok. Her back is a lot better but she is still very, very nervous about her foot.

She continues to be the most rubbish patient! But I'm working on her, LOL....

Dad isn't feeling so clever today - he's sweaty and shaky. There is a cold going round so I'm wondering if he's caught that, or if it's just part and parcel of his condition. Doctor came yesterday but Dad was fine then. We've given him some paracetemol and will keep an eye on him. Luckily a District Nurse comes every day so we can ask him/her for advice if necessary. One of them is a bit vague when we ask anything - but the other two are pretty switched on. I hope it is one of the better ones who turns up later.

District Nurse says that Dad might have a water infection. She couldn't test his water as she didn't have the testing sticks, but they're going to do it tomorrow.

This evening the Carers noticed that his puncture site from the Clexane injection had been bleeding. After a few phone calls (District Nurse, Dr Tseung) we applied pressure and it more or less stopped (just a few little drops afterwards). Hoping it doesn't worsen in the night, but will keep checking on it.

At midnight I had the bright idea that if Dad took a Stemetil (anti nausea and vomiting drug) then it might stop him being sick on waking (as he has been for the last week). Not my best idea ever, when he took the tablet he was sick. A lot. Poor Dad. He said that he wonders what his body is trying to tell him - the vomiting, bowel movements and bleeding. He got a bit fed up and said "I know I shouldn't talk like this, but I just wish I could go to sleep one night and not wake up next day." I understand that. I think.

Dad's New Car

Today we achieve a milestone - the day that Dad's new car (his treasured Ford Focus C-Max) arrives. Lorraine and Mum go to pick it up at 11.30am from the Ford Dealership in St Helens. They're quite excited because they get a free cuddly polar bear (the Dealership is called Polar Ford).

I'll be brutally honest - back in Feb/March, I didn't think Dad would be around to see this day.
He deteriorated so fast in the hospital, I just assumed that the pace of his decline would carry on at that rate. But, here we are in mid-May and Dad is still with us and I think will be for a little while yet.

He really wanted this car. He was so chuffed when they ordered it (back in early January, before any of his illness started). When he was first ill, mum anguished about whether to cancel the order or not and decided not to. I know he'll never drive it. I hope he feels ok about it when it turns up. We'll see. I hope mum is ok with it all.

Dad said to me earlier that if he'd been picking the car up, the last few weeks would have been like an eternity waiting for it. He also said he might have a look at it through the window if he feels like it. We could move his bed round and take the nets off and get Lorraine to drive it up and down past him!

This morning, Dad commented to Lorraine about his "skinny legs". She said yes, they are now. He said "it won't be long now, everything is shrinking". He was looking at his arms which are also going very thin. Lorraine told him not to say that, and he just said "Everything is shrinking, except my heart, which is still big and full of love for my family". What a lovely thing to say. But sad. Sometimes I am in his room and I look at him and think "My god I am just watching you die, very slowly" and it is too awful to think about... so I have to click my brain onto another topic really fast.

While mum and Lorraine were out Dad and I chit chatted about anything and nothing really. At one point he was asking me how his face looked - did it look gaunt and would people be shocked when they saw him? I said, no, he looked fine - same as when he last looked (a few weeks ago he asked for a mirror to see his face). I think we were talking about Stella coming to visit - he must have been wondering if people noticed a difference in him.

Mum and Lol got back at lunchtime - unfortunately the car dealers had screwed up the insurance and so neither of us could drive the car until about 5pm when it was all sorted out!

The car is lovely - I took some photos and brought them in to show dad on my digital camera. He was very pleased. He got a bit "cross" with mum for getting upset about him not being able to drive it (she'd gone in and mentioned it to him while we were out). I know he doesn't want people crying over him all the time, but he needs to understand that mum is the other person most affected by his illness. She can't (and shouldn't) be strong ALL the time.



Went for a little spin in the car at tea time. It's really nice to drive.



Spent the evening eating Maltesers, on the computer and watching crap tv. My internet habit has changed lately. I know I spend far too much time online, but I used to be on travel sites, researching trips - destinations, hotels etc. Or I'd be on gossip sites, forums - all sorts of things really, to the point where people (Roy and my Mum!) would wonder how on earth I managed to find so much to look at. Now I spend hours on a variety of Cancer websites and Forums. Macmillan, Johns Hopkins, Pancreatic Cancer UK, Pancan - you name it, I've been there ;-).

Also on tv tonight is "How to have a Good Death". It's a repeat of a show fronted by Esther Rantzen and covering the taboo topic of death. They're following a man who is 7 weeks away from dying of cancer, and so I'll switch it off soon, I think.

Mum has gone to bed now (11pm) and I'll settle Dad down about midnight and hit the floor.
Am trying TWO duvets underneath me tonight, see if it takes the strain off my bones!

A Difficult Day

It's been a funny day. I popped down to Crossgates to go to the bank this morning and on the way back to the car I saw Jackie and Pauline - two neighbours who live at the back of us. Jackie has been battling breast cancer and unfortunately it has now spread to her stomach and brain. She was being pushed by Pauline in a wheelchair and she looked awful. It really unsettled me.

Funny thing is, they don't even know me! I only know them from being able to see them out of our bedroom window, but they wouldn't recognise me. Roy knows them now, through having chatted to them about the fence, so that is how I know so much detail about Jackie's illness. I just hope that what I saw was the result of aggressive treatment - and not a decline caused by the disease.

Then, driving over to Mum's at lunchtime, Jeremy Vine (BBC Radio 2) had a programme about "being widowed before 50". He read out several very moving emails and then he introduced his guest - Barbara Want, widow of Nick Clarke, the R4 presenter, who died last November of cancer. She was describing her grief, and how she was (or rather, wasn't) coping with her loss. She has twin 4 year old boys. It was heartbreaking. Jeremy Vine was crying reading some of the emails from listeners. Maybe I shouldn't have listened. Ignorance is bliss, right?

Mum was a bit touchy tonight - I think she was frustrated because her foot was "pulling". I decided to stay here rather than sleep at Maureens.

Dad is settled and watching tv. I think he's doing better than any of us just now :-). On a more serious note, he's started to be sick each day on waking now. We need to mention this to the doctor.

"Not a nice cancer to have...."

Dad was less settled last night - he coughed a lot. I went in a few times but he seemed to be sleeping so I didn't disturb him.

He was sick just after 7.45am. Strange brown stuff. I kept it for the District Nurse to look at in case it is something we need to flag with the doctor.

I am now nursing both mum AND dad! Earlier this week mum's vein popped again, and she has to take it easy when that happens. Well, all the sitting about with her feet up has now made her back go and she's in agony this morning. So I'm staying here overnight and will go home tomorrow morning (and let my sister take over at the weekend).

It's not fun to be looking after mum. She is the worst patient in the world, ever! She hates being dependent on others and so instead of just getting on with it, she gets very upset and stressed about it all. Thus causing stress for her carers!! LOL.

Dad, on the other hand, is a dream patient. He just accepts that he needs looking after, and so long as he still feels in charge of things, he gets on with it without complaint.

Even cooking for mum is a nerve-wracking experience. She is a bit of a creature of habit, to the extent that she has the food set out on her plate in a certain way. I did her some salmon fish cakes with salad the other night and got the tomatoes and mayonnaise in the wrong place!

I hope you read that in the light hearted spirit in which it was intended... I love my mum to bits but she has some funny ways (as do we all).

The District Nurse just said to keep an eye on Dad if he's sick again. She wasn't sure if the vomit had coffee grounds in it (dried blood from the stomach) but said it shouldn't have been because he's on Clexane. Didn't look like coffee grounds to me (which we saw when he was in hospital after his INR level went out of control). I was concerned it could be faecal vomiting but Gail didn't think so - said it seemed more like food stuff.

After Gail (District Nurse) left, she phoned the house to say she had lost her mobile phone and could we do a search for it. So we did. Everywhere. Including the rubbish bag containing all the remnants of her treatment of Dad today (wound dressings and various other clearing up stuff). Thank goodness for rubber gloves! Bottom line was we couldn't find the phone and she later discovered she'd left it at home!!

We had visitors tonight - Joan, Zodie and Wally. Joan is my cousin - we were extremely close as kids and into our young adulthood. Zodie (nickname! Real name Steve!) is her husband and Wally is my Uncle (Joan's dad). Dad was delighted to see them. Joan had me in stitches remembering some of the things we used to do to torment our poor Nana! Dad was delighted to see them. He told Wally that the aim of the care plan is to keep him comfortable and pain free, and as long as that is how it goes, he's happy. What a guy - he must spend ages working this through in his head, and to settle for that (and not to moan about what he can't do) is quite an achievement, I think.

Quite funny to hear my Uncle rapidly change the subject when Dad got a bit graphic about certain aspects of his illness (its the obsession with poo that raises its head a lot!) and also talking about how "those girls (me and Lol) have seen every inch of me now, and the things they do are amazing". Also funny to hear Dad crediting Dr Rathbone with him getting care allowance. Um, yeah... I do recall Lorraine and I sitting on the phone to the DWP and also spending ages filling the forms in, LOL!

It's great to have visitors but it does stir up the emotional side of my head, too, when they come. We kind of live in our little bubble of the daily routine and so when "outside influences" come in we have to see them with Dad, and talk to them about Dad, and see how they react to seeing him. It definitely unsettles me. Not that I would change things - I love to have a variety of people visiting Dad, it is good for him.

Dad was sick again when the carers came. This time he lost his spaghetti hoops (which had been his tea) and some of the raisins from the bread and butter pudding he had at lunchtime. He ate a few scoops of ice cream later on tonight.

Dr Samid, after he'd spoken to Lorraine and I about Dad's confirmed diagnosis on 8th March, ended his conversation with some disturbing words. "This is not a nice cancer to have". He followed up by saying that no cancer is nice, but pancreatic cancer in particular was not good. It has played on my mind a bit ever since, but I didn't ever ask him or try to second guess exactly what he meant. I suppose some of the stories I've seen on various cancer websites has given me an idea of why this isn't a nice cancer. I just hope the vomiting isn't the start of Dad moving into another, more horrible, stage illness.

More than anything I just want him to go peacefully - even if that means suddenly. I don't want the final stages dragged out and filled with nasty symptoms and side effects.

More forward planning

Dad slept from midnight until 8.30am! He only coughed once - at about 5-ish but when I went in he seemed to have settled back down so I didn't bother him.

Sleeping on the floor turned out to be not such a great idea for me - I think my bones and joints are just too old for that sort of thing now!

Walked up to the Post Office this morning to get the papers and pensions and post some letters. Since starting my blog I have been walking about, camera in bag, ready to snap interesting things. Haven't taken a single picture yet! Oh - apart from some yobs messing about in the Bin Store to the flats last night, but I only got the backs of their heads.

Spent a good hour or more today getting blood out of the carpets from mum's latest vein-popping episode. I'm quite pleased at how well they've cleaned up. Maybe I should have taken before and after pictures, LOL.

So, here's the forward planning I've been doing. This afternoon, when I nipped out to get some prescriptions, I had a look at the McCarthy & Stone development in Farnworth. It's really nice and I had a chat to the sales lady. Apparently there are some 1 bedroomed apartments still available. I took some details and was trying to figure out how to raise the subject with mum - wasn't sure how she'd react.
In my opinion these apartments would be perfect for her as
a) there is a 24 hour care line where you can get assistance if you need it
b) there is pretty much every type of shop etc. she would need on a day to day basis within a 50 yard walk (Post Office, Chemist, Co-Op, Bakers etc)
c) there are communal rooms where people are around if you feel like some company

The sales lady also told me that the Complex Manager is an ex-District Nurse and that her husband is the Head District Nurse.... turns out it's Brian, who looks after Dad! So when I got home, I was telling mum and dad about it. Then mum and I had a chat and she would be very keen to investigate more about it. So we'll look into it properly. Timing is going to be the major issue, I think.

Dad is ok. Nothing new to report really.

Wednesday

Woke at 5.50am (surprised to find it was light!) and Dad called me to cover him up as it had got a bit chilly. Then he coughed for a while. Mum got up to see if he was ok, and we all had a quick chat (he was telling Mum about my Poop Patrol last night - for some reason everybody seems amazed at me doing that!) and went back to bed.

Next thing I knew it was almost 8.30am! Got up, sorted Dad's meds and breakfast out and jumped in the shower before the Carers arrived at 9.30am. Dad really enjoyed his porridge this morning - it's incredible how you can feel so uplifted after taking him a meal that he likes. Funny how our priorities and the things that we consider a "victory" change as our circumstances alter.

Dad was still keen to discuss his funeral plans and wanted me to reassure him that Mum and Lorraine had been informed and were happy with things. He wants us to have a celebration of his life, not a dismal affair. He said there is nothing to be sad about - he's nothing to regret, and nor have we as a family. That's very true.

This morning, the three of us spent some lovely time with Dad reminiscing about family stuff - holidays, days out, funny stories and arguments! Dad had forgotten about the time he didn't speak to me for about 6 weeks (my fault!) and said that he knew he'd made some mistakes in life, and that being stubborn was one of his faults.

Popped out to do some shopping and stuff after lunch and picked Emily up from school on the way back. She'd hurt her foot and it was bandaged up. When we got her home and checked it, it looked infected, so Lorraine decided to take her to the Doctors. We got an emergency appointment with Dr Rathbone (who must feel as if she is now part of our family, she see so much of us these days).

So another trip to the Chemists for prescriptions, and then home.

Feeling a bit drained tonight - all the funeral discussion has been great, in terms of understanding what Dad wants and making sure he knows he'll get it, but mentally quite hard work. It's been especially difficult watching mum deal with it.

Staying at mums again tonight. For variety, tonight I'll be trying out sleeping on the floor instead of the recliner chair, LOL.

Still haven't cleaned the blood out of the carpet since mum's accident yesterday.

Learning new life skills #24!

I think I have commented before on how I'm learning new life skills along the way as I care for Dad.

Tonight I am proud to report that I did my first ever solo Poop Patrol. The squeamish should stop reading now.

My sister Lorraine normally deals with the "business end" of clearing up if Dad has loose bowels. She says she's had two kids and is therefore better equipped for it than I am.

Tonight, cos I'm staying, Dad called me in about 11.15 to ask if I was capable of doing it. Course I am, I said. So off we went. It takes me about 10 minutes to prepare everything (I am keen to have several bowls of water and 20 plastic bags around me in case of clumsiness!).

So there you go - another certificate due to me for Caring Skills ;-)

While I was sorting things out, Dad took another opportunity to discuss his funeral plans. He asked me to confirm that what he's suggested is along the lines of what mum wants. I said yes, and he said he thought he'd discussed it with Mum in the hospital (I don't recall this, though).

I said that the only thing mum wanted to discuss with him was about possible burial of his ashes at Yew Tree Cemetery (where her family grave is). That reminded him that he'd forgotten to tell me his "Ashes Plan". What he wants is for us to take in flowers to Nan and Grandad's grave one day, and while we're there "scatter my ashes with Tom and Lil". I explained that we were going to ask for permission to inter his ashes there (he's not Catholic and it's a Catholic cemetery). Oh that's ok he said - but only if they allow it, and only if they don't charge a fortune for doing it - otherwise just sneak me in. I had to laugh.

He asked if Lorraine would be happy with the funeral proposals so far. I said yes. I told him we'd make it nice for him. Nice and simple he said. Yes, and meaningful, I added.

A little bit of advance planning...

Conversation with my Dad tonight. As best I can remember it.

Dad: Jan, have you and mum and Lorraine talked about the funeral at all?
Me: No, not really.
Dad: Ok. Well, what I want is something really simple. I want you to get the least expensive coffin you can find - they'll cover it over, and it's going up in flames anyway, so don't go mad and get one of those big fancy things.
Me: Ok
Dad: And I was thinking about Birchfield Crematorium. A short and simple service. For music I'd like Mario Lanza's I'll Walk With God. I know I've talked about music before but you can't have too many songs so just that one please.
Me: What about your Mahalia Jackson, Lord's Prayer?
Dad: Well not everybody likes that.
Me: I like it.
Dad: Do you? It's a bit long isn't it? I think they only really have music going in and coming out, and it's a bit much for people to have to sit through too much.
Me: Well we can ask and find out if there's a way of fitting it in somewhere appropriate.
Dad: Oh, ok then. See what they say. Then, if you, Neil or Lorraine want to get up and say a few words, then that would be fine. But keep it short and sweet.
Me: Yes, we would like to have our own words.
Dad: And then onto somewhere like the Church View for a drink and a little buffet. And you can all have a good laugh together.
Me: Well you've given us plenty of laughing material over the years Dad - so you can be sure it will be celebration of that.
Dad: I don't know if you can pick your time, but try for something near to mid-day so you can go straight onto the pub.
Me: Ok.
Dad: I'm not being mean, but I just think it's ridiculous the amount of money that some people spend on funerals.
Me: Yes, it's crazy. We won't do that, Dad. We'll keep it simple if that's what you want.
Dad: Yes. Do you think Mum will be ok with that?
Me: Yes, I do. When I said we haven't discussed your funeral, then I meant we haven't really planned anything in great detail. But from a few little conversations we've had then I know your thinking is exactly in line with what Mum was thinking of.
But I think she'd like to chat it through with you to make sure you both understand each other.
Dad: Yes, well when she feels up to it.
Me: Ok. So - you still want nobody wearing black then?
Dad: Oh no, no black. No black ties. Nothing like that. And family flowers only - if anybody else was thinking of sending any, maybe they'd like to make a donation to charity instead.
Me: Yes, that's a nice idea.
Dad: And you can go through the phone book and...
Me: Don't worry Dad, we'll make sure that everybody is contacted.
Dad: George will tell a few of the lads - there's one or two who might like to come along - or you could ring Jimmy Wynn directly.
Me: Ok. Don't worry. We'll sort it. So - you decided against the Jazz Band then?
Dad: Oh yes - unless the lottery numbers come up tomorrow.
Me: Mum will be pleased - I think she thought a Jazz Band would be a bit much for Widnes!!
Dad: Well you can buy everyone the first drink and then tell them they can have another one on the house if they'll listen to Sing Sing Sing.
Me: I'll tell them they're lucky - if you'd had your way they'd have been dancing behind a New Orleans Jazz Band all day!
Dad: Laughs. Will you have a word with mum about this?
Me: Of course I will.
Dad: She's probably heard us anyway, knowing her ears.

I walked into the lounge and mum had heard. She was crying. We had a chat about it and she was fine - just said that despite having had conversations about funeral music etc. with Dad in the past, that was before it was real.

I told you Dad was in organising mode recently!

Tuesday 8th May

I have just realised that I don't need to head up each Blog post with the Date as it appears automatically! I will have to think of some more imaginative titles for each post........

Spotted this in the Mail yesterday.

http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=453095&in_page_id=1770

Some of the comments people have left are really harsh - so judgemental. Maybe that's Mail readers for you ;-0. Anyway, Lynn, one of the PC Patients on the PCUK forum commented that:

"OMG that's such a shame but he is alive and well now and if it was me I think I would leave it at that and start again. We are only human and doctors are human too, yes there are lessons to be learned but the money he could sue for could be better spent improving treatment and diagnosis of pancreatic cancers. He probably sold his story too.
I think the paper could have better used their space and devoted a section to the figures for pancreatic cancer and how a diagnosis of it affects the family unit and changes their lives. The light needs to be shed to the world about this horrid silent killer. It upsets me that other cancers get much more publicity and funding."

Then of course, I spent a good few minutes last night pondering on my dad - what if it's all just been a big mistake? Why isn't he deteriorating as fast as we thought he would? Why isn't he in pain? Why no jaundice?

But then I have to get back to reality.

Mum's vein in her foot "popped" again today. Twice. This is not good - she's seeing the doctor tomorrow. Lorraine did clean up and tourniquet operations as I wasn't here... and mum has had to sit with her feet up all day, which is driving her potty.

Dad's mates (Phil, George and Ritchie) came to see him for a few hours this afternoon. They had a good talk - they told me on the way home that they could hardly get a word in edgeways :-). Dad was very pleased to see them, and has also asked to see Joan and Wally (our cousin and uncle) again. It's great to see him wanting more visitors again.

I asked Dad one day if he was ok... it's a stupid thing but we do still wander in and say banal things like "are you alright?" and "are you ok?". He just said "Yes, I am. I'm getting lots of loving care and attention".

Dad is leaving us with so many lovely words and memories - how kind and thoughtful of him. I don't know if he realises he's doing it - but I suspect he does.

Monday 7th May

I have some Open University material and am seriously thinking of enrolling. I'm interested in doing Psychology.

I think it would be sensible for me to do a short course first (which costs only £99) and then see how well I take to
a) the subject of psychology and
b) distance learning.

If I continue, then the course I do counts for credits toward the degree - so a no lose situation really.

Well, this Virgo is proud to report that her blog is now all properly split up into the right days. (I'm bog eyed with it, and my neck is sore, as is my mouse wrist, but hey - I couldn't rest until it was finished). Now I want to add some more retrospective comments in for March/April and then I'm done. Giving it a rest for today though. It's been exhausing and quite emotionally draining going over some stuff again.... kind of raked up feelings I've been able to park for a little while.

Roy is watching snooker so I think I will have a rummage round the OU website.

Update: I have given into peer pressure and ditched the shiny black background.

Sunday 6th May

Woke up early - didn't sleep well. Feeling a bit ropey after too much of the cheap red wine at Lilli's restaurant.

Had a chat with Roy this morning. I explained to him that whilst my fear of Dad actually dying has to some extent been lessened (by reading Final Gifts and what I've seen online) I am now started to get really worried about the bereavement/grieving process. I guess I just had in my mind that because we're all coping so well with the process of watching Dad die (awful though it is, you just kind of get on with it on a day to day basis) then I would be "ok" afterwards.

But, seeing what people are writing on the Macmillan and PCUK websites, I see people who months and even years later are still struggling to come to terms with the loss of their loved ones. I just hadn't really thought about it. I know when I lost my Nana I sobbed and felt racked with grief every day for a long time. It's starting to scare me a bit.

So there I go again - jumping ahead of myself instead of taking it how it comes. I suppose I like to think that if I can prepare for things, then I can to some degree control them.

Roy, as ever, was brilliant. He didn't try to soft soap me with "you'll be ok" and all that crap. He just said that yes, it would be awful, and there is no getting away from that.

He has this Mountain theory about losing a loved one. He says that you're going along your life just fine and then *bang* something will happen and it's like life just puts a huge Mountain in your path. His view is that you'll never get over the Mountain - it's just too overwhelming to think you even stand a chance, but that somehow you have to strive to find a way around it. Your inner strength will help you find a path around the Mountain and as you struggle, you realise that the Mountain isn't an obstacle at all - but a great big heap of loss and love and you one day come to accept that. You also lose a part of yourself - which in time you rebuild and replace, but it's never the same again....

So, we took Lillie and Albert to the Beehive for Sunday Lunch - in celebration of 55 years of marriage. We had a very nice lunch and came home to pretty much veg out in front of the tv.

Mum says that Dad has been sleeping a lot today, and also has the runs again.

Her washing machine is broken. Another one for the "that's all we need" list.

Friday 5th May - going home for the weekend

It's Friday - always a good day for me as I get to see my husband after 4 nights away. I do look forward to that.

Dad was pretty good today - he's doubled up on his Zomorph tablets, but didn't seem groggy or any worse for it. He was sick after taking some Solpadol (and after a hot choc drink) so we're now recording sicky episodes in his Pain Relief diary just to see if we can spot a pattern.

Gail (District Nurse) came today and apologised for having upset Dad a few weeks ago. They had a good chat, and seemed to really clear the air.

Dad was talking to Gail about his Reiki session with Sue, and how much he'd enjoyed it. We asked if he would like to have Sue back and he does, so will give her a ring. He also has asked to see George and "the lads" again, which is great.

I am convinced that Dad is determined to sort his own stuff out before he dies.... today he had Lorraine clearing out all the toiletries and smellies that he won't ever use again. He wanted them divvying up between the men of the family... well, apart from Neil who seems destined to inherit socks and comfortable shoes in the wrong size.

I took the "Memories Box" down out of the wardrobe today and hope that Mum and Dad get chance to go through it over the weekend. Which reminds me - Dad asked me why mum had changed her mind about coming out for lunch with us on Sunday. I said she felt bad about going out when he couldn't and he said "Well, she'll have to get used to that. I want her to get out and have a good time with her new wealthy toyboy after I'm gone." I just laughed. He told her the same thing himself, later.