June

At 8.55pm on Monday 24th January 2011, my mum took her last breath.

I am glad that my sister, myself and my brother were all there.

Im certain this photo is how she would like to be remembered.

My Mum

June Garside

2nd June 1944 - 24th January 2011

A Rock and a Hard Place

Last night was possibly the strangest night of my life.

I had arranged for my boyfriend to have my son and I went to mums.

She had been restless before I got there. Shouting the word 'Mam' and reaching out.
My sister said this was the most distressing day so far.
When mum was reaching out though she had her hand on the controls that raise the bed. (good job my sister managed to stop her from pushing them!)

When I had got there about lunchtime, mum was in a comatosed state. They had started mum on the 'pathway'.
Apparantly this pathway is also known as an 'ICP' or intergrated care plan

They ran through with us who we need to phone when mum eventually does pass.

She doesnt respond at all now and breathing is pretty shallow and quite fast, with the odd groan thrown in.

She is lay on one side facing the window though her eyes are closed.
I was sat in the chair behind her for a few hours last night on my own. When my sister returned to gather some things from her house, mum was hot. I hadnt realised. I had left the central heating on and mums cheeks had become flushed.

We all stayed awake as long as we could and talked, laughed and cried. I did get told off though at one point as I didnt realise I had my foot on mums catheta draining tube. Ooops
We have had to find things to laugh at during all this. Although sometimes it has felt a bit wrong to be laughing. I honestly think that mum would have been laughing with us.

During the evening her face started to change, all lines dissapeared from her face and she looks rested now. Her chest started 'rattling' and I lept up thinking'oh my god is this it?'
It wasnt though, the rattle went of its own accord after about 40 minutes.
The evening nurse said that if the rattle comes back and gets too distressing they can come and give her some drug that clears it.

There was myself, my sister and my niece there and we stayed all night. We tried to take it in turns to sleep, but it was just awful. At one point I ended up on the floor at the bottom of mums bed with a quilt but I didnt sleep. I was listening to her breathing, then I was dreaming, then the sound of the driver made me jump.

At 5.30am I decided just to sit in the chair. I suppose it was then I started thinking...............

My mind wouldnt stop..........At first last night I thought I would like to be there when mum took her final breath, now Im not so sure.
I know mum said numerous times to me that she wasnt bothered who was there at the end.

I think your mind starts to play tricks on you, a felt a breeze on my left arm no matter where I sat. Then I was hoping there wasnt some big dramatic exit and a wail fom mum. Hoping that she wouldnt go while it was just me in the room. I felt brave while we were all there. I felt scared.

I couldnt wait till daylight, I dont know what difference that makes but I was relieved when my sister woke up in the next room after her 3 hours of sleep, and daylight came.

I came home this morning, I have been missing my son. Its like having split loyalties, when Im at mums I want tobe here. When Im here I want to be at mums.

Considering my mum was so inpatient I can believe she is hanging on like this. I told her when we was alone today that it was ok, she can go when she is ready.

Part of me hopes I am there when it happens, I wonder what mum thinks? Is she hanging on for none of us to be there...........Is she hanging on for ALL of us to be there? I dont know, this is it isnt it? A rock and a hard place. I want her to go soon, but I also want her to hang on.

Pathway

Its been a rough few days since my last post.

Mums still hanging on, but it may only be a matter of a day or two now.

The driver now has diamorphone aswell as the anti sickness drugs.

Mum has started the biological stages of dying. She is having the odd hallucinations like having a drink from her fist, like a child pretending to have a drink.
Last night she told my sister that she had seen angels and reached out. She has been saying things like 'Not Yet' and asking for her mum.

Her body seems to have stopped absorbing fluid and she is now drinking from a 5ml syringe, but sometimes this just dribbles back out again.

I was very angry this morning, wound up. I just want to help my sister, be there for mum and do my bit but Im so limited with my little boy. I dont know what I can do to help. She needs rest too. Its almost like having a new born baby again. My sister is sleeping in an armchair at the side of mums bed.

I have been finding it difficult to be upset at times. A lot of what made my mum, my mum is being consumed by the cancer. Sometimes I look at her and see a shell. Her eyes no longer bright but sunken, a mouth that is now a grimace or a snarl rather than a laughing smile.
What once was a happy size 18 is now just bone, hardly any supporting muscle.

She didnt recognise my boyfriend yesterday though she does recall seeing him before. Then tonight my cousin came and Mum knew him instantly. There are moments of complete coherancy, perfect speech and lucidity. Granted, these moments are few and far between but they are still there.

Today I have stayed most of the day. Macmillan came and suggested that mum is put on a 'pathway'. I wasnt entirely sure what this is all about, all sounds a bit dodgy to me. But once the district nurses came they explained that it was like a checklist that they use in hospices when it is coming to the last few days of someones life.
One of the district nurses said that it makes the end a lot nicer and easier, though Im not entirely sure how a checklist can do either of these things.

The nurse that came out today said that she didnt feel that mum was ready for the pathway, so it hasnt been done yet. The speed in which mum has deterioated in the past few days, I am really preparing myself for the worst. My car is reversed into the driveway just in case I need to go anywhere in the middle of the night.

What The F**k?

I know its unusual for me to post twice in the same day but this was just too much of a little jem not to be shared.
Hopefully after my last post moved a few people, this might at least get a smile.

I have been to mums today, the driver had already been inserted, but not long after mum acidentially pulled it out. We had to phone the nurse again to come and put it back in.

As we were all sat there waiting for the nurse. Mum was sort of sat up half on the bed.
Her eyes opened wide and she looks at me and says 'What the f**k?'

Then shut her eyes again.

I said "For God's sake, dont let your last words be, 'What the F**k?' cause me and Janet might end up in prison!"

A Mothers Kiss

Seems that mum is being sick an awful lot now, every hour or so.

The GP came and gave her an anti sickness injection last night and the syringe drivers are being fitted today.
These are little battery operated boxes, taped to the skin where the drug of choice (anti sickness or pain relief) can be put into and it dispenses it through the syringe at regular intervals.

We were told last week that we would know its coming to the end when these drivers are inserted. Of course now, knowing that this is happening today has caused a lot of distress.

The macmillan nurse did say to my sister that if mum stops being sick then they can remove the drivers. I think this has angered my sister. And I understand why. It feels like they are giving us false hope.
Without sounding like a pessamist I think this is it, the decline. There is no hope..........just one of a quick and peaceful end.

I have just spoken to my sister and Mum had a rough night last night, the sickness has continued despite the anti sickness drug so I think the drivers might be for the best.

Last night when I left, I said 'I'll see you tomorrow mum', she replied, ' make it soon'
I did something I haven't done, As she lay there curled up in her foetal position she seems to have adopted. I leaned over and kissed her head. I kissed it in the way I kiss my son's head. Like a mother. A kiss from a mother to a mother. She muttered, ' that's nice'
and low and behold, I cried.

I guess I kissed her knowing that if the drivers are going in today then she might be knocked out so when she was still a bit with it, I let her know how I feel.

Update

Mum's still hanging in there.
She is now confined to her bedroom. Her body is deteriorating.

She is sleeping a lot and when she is awake although some things make sense and she tries to join in the conversation a lot of stuff is completely random.
Sometimes it looks like she has been hypnotised, she will raise her head, speak at random then put her head down again and close her eyes.

She says she is dreaming a lot. I am too........... The other night I had a dream, and in this dream, I was dreaming!!! What I was dreaming was that mum had died and no-one had told me.
Now there's one for dream analysis!

Her skin is itchy which I think is because its dry and not really getting air to it either.
We moisturised and put a new cotton nightie on her last night.

The other day when I went upstairs she was curled up in a foetal like position, naked, she has even stopped covering her head now.
Her body was so pale and although not exactly skin and bone but noticeable weight loss.

I got her dressing gown on her and covered her up.
My mum was always on the go........always doing something........painting, decorating, cleaning, working, always so active, now this. She can barely sit up herself now.

Last night, I took my laptop to show her some photos and videos of my son. She couldn't keep her eyes open to look at them but she tried.
One of the things she said last night was she asked me what would my boyfriend like to eat if she made him something. I said he would eat anything. It was quite sad but amusing at the time, but when I got home and relayed the dialogue to my boyfriend..........I cried.

I always manage to stop myself quickly, I don't want my son to see me upset and I also think I'm a bit afraid. Afraid if I start crying, I might not be able to stop.

A lot to do today!

A very quick post this morning as we have a lot to do today.



Yesterday was so busy, phonecalls and people coming to Mums house, after doing a lot of whinging we got visits from the gp, district nurse and macmillan.



Today I have to go to the gp's to pick up a prescription which contains 'end of life' drugs.

When mum stops being able to swallow her pills, any drugs can be given through battery operated driver. Once we have them in the house then everything is to hand.



The hospital bed from the front room is being dismantled and moved upstairs to mums bedroom, which we have to dismantle and drain her bed (its a waterbed!).



She now has a pain which the gp thinks could be something to do with her liver.



This morning the palliative care team are coming to discuss things and later this afternoon the occupational therpay are coming to discuss aids to help us.



Yesterday morning we managed to get mum to the bathroom and let her sit on the edge of the bath while she sponged herself down.

This alone was so traumatic. It took ages and a lot of pain and tears to get her to the bathroom.



She doesnt want anyone else to look after personal care and was even funny about me being there yesterday aswell as my sister.



We have been told to have a think about what would help us out but we feel like we are in a viscious circle as I think first we need to know what help IS actually available to enable us to decide.



Right lets going on today!!!!

Rollercoaster

I was thinking that it was all bound to get me down in the end, and I think its quite understandable that my last post was me feeling so down.

I think the blog really helps me as its a way of self counselling if you like. Last night I thought that unfortunatly this blog seems to be becoming more about me and my feelings rather than mums illness. But then I thought, the two are one and the same arn't they?
I felt ok again after my downer, it is so sporadic! When people talk about an emotional rollercoaster, they arnt wrong.

However, I only like rollercoasters if they look safe. I prefer the corkscrew at Alton Towers to the old rickety Grand National at Blackpool.
I guess what Im trying to say is that I dont mind being turned all upside down, let go from the top, free wheeling, as long as I feel safe with them big over shoulder harnesses holding you in.
I guess the irony to this analagy is that the corkscrew has now been dismantled.

Monday Mum didn't get out of bed all day. We called to see her and ended up in her bedroom for the duration of the visit.
She has been making it upstairs in the evening to go to bed as the hospital bed hurts her hips so she has been using the bed downstairs for during the day.

She said yesterday though, was her worst day. She feels so poorly. She wants to go now. She has truly had enough. She said she wishes it was over one way or another. She had made is downstairs but just sat there drifting in and out of sleep.

She doesnt want to move. She made us cancel the trip to the hospice. She isnt waking up until about 1pm every day so sending a bus for her at 9.30am would be a bit difficult to get her up and ready.

We really do need help now. After I have finished writing this I need to make some phone calls.
Mum needs cleaning, and we need help. No one is doing what they said they would. Offering a comode (which we dont need) isnt good enough. Im afraid by the time they get around to doing the assesment for a carer to come and bathe mum or help us. I think it might be too late.

Then this gets me thinking too about all the different drugs that mums taking. What the hell is the point in steroids and anti biotics when she just wants to go?
Why doesnt anyone speak the truth? Like, it may only be a few days.....weeks......just tell us something!!!

Everything that is happening seems to everything that mum was afraid of happening. She is losing her dignity, we are having to do things that I dont think we should be doing. It doesnt bother us really, its our mum after all but with all this 'support' that people keep saying is out there then surely it shouldnt have to come to this, that we feel like we are begging for assistance.

Depressed

I feel depressed today. Maybe I have for a few days.
I have loads of emails, texts and messages on facebook, I even started screening my calls, any danger of serious talk...........I ain't answering. I havn't replied to my messages because I really cant be bothered. Ive been so exausted for no reason whatsoever, just so tired all the time.
I have spent most of the day in bed.

The other day I asked mum if she could go back, would she accept the treatment again, knowing what we know now. I dont know if she knew what I was asking and I didnt get a proper answer.

All along I have always said a massive, positive YES of course it has, it has bought us time together.
We KNEW that the chemo was never meant to be a hope of cure. We KNEW that this stage would eventually come. But now, everything, the chemo, the radiotherapy on the brain, trips to the hospital, everything, it all seems so pointless.

Maybe we should have let her go, the palliative care would have been the same. Maybe the buying time is just so we can all get our head around the situation. Why delay the inevitable?

I know that theres no going back, we can't change our decisions. But I just cant help but wonder what we would have chosen if we could choose again.

Its not right is it? being helpless while watching mums body gradually shut down.

Ive been so angry, maybe angry is the wrong word, just get easily het up about things that are beyond my control. Stupid little things ........like supermarkets, councils, not being able to spend as much time as I would like to with mum. The first two examples, my boyfriend is a great help. Makes me see things rationally, at the times when I feel completely irrational.

The last one though, I have to tell myself that even if spent more time with her what would I do anyway? Her general care is being taken care of, what does she need me for? nothing..........I would probably just sit there and I dont think we can really have a proper conversation now anyway.

Always tried to see the positive throughout this situation...............Right now........this situation........wheres the positive?

Even More Drugs

Firstly let me start off by apologising for the amount of spelling mistakes in the last post!

Sometimes I get so wrapped up in what Im typing I never stop to check hence, scared suddenly becomes sacred.

Speaking of scared, when I saw Mum yesterday she said she was scared of going to sleep in csae she didnt wake up, but yesterday morning she was that bad she wished she hadnt have woke up.

The other day I took my son round and managed to keep him quiet with headphones and various things to watch on youtube. So we managed to stay for a while.

The dog farted and I thought it was my sons nappy, as I was changing it I realised it wasn't him but the dog. Mum managed to get up out of her chair and quickly waddled over to the window to open it.

Mainly now all the time that we are there she has her eyes shut, even sat up in her chair. Her face looks like the light hurts her eyes but when I ask her if she wants me to turn the big light off she says no.

We know she has lost even more weight as my sister said that when she helped her out of bed the other day, mums rings flew off her hand.

Yesterday the Macmillan nurse and the gp came again. They said she should be on the morphine pills like I said the other day and use the oramorph to top up. They have iven her codeine phosphate linctus to supress the cough as well as the steroids, the acid reflux pills, cyclazine and now anti biotics too to try and clear any infection on her chest.

They have arranged for a visit to the day care at the hospice for Tuesday.
When I went to see mum yesterday she told me it was 'tomorrow' (Thursday)
She seems to be getting confused a lot, and I know that my son touched her legs yesterday and she let out a cry in pain.
And I mean he touched her leg. Her skin seems very tender. I know my sister said that Mum was strugglimg to remove the cap from a deodrant bottle even though the top was already off and when she sprayed it, it hurt her skin.

I could only stay an hour last night and felt a bit crap because of the short visit, but then later when I came home I remember a conversation I had with mum a couple of weeks ago about she didnt want anyone moaning if they wern't there at the end.
She said she didnt want anyone upset if we missed it. Its not important.

Today I think me and my sister are going to try and work out some way of how to bathe mum.
One suggestion I had was my sons paddling pool in the front room, let mum stand in it and she can just sponge herself down.
This is the stuff we need help with...............How are we meant to do that, plus if mum isnt willing then what are we to do.

Guess we'll just have to see what today brings.

Bad Day

Mums had a bad day today. God its so up and down, there really is no consistancy to how she feels.

Yesterday I saw her briefly as I had husband to be and my son in tow on the way back from a walk. She was enjoyng my son being there for a short while but I think our visit was just enough.

She didnt seem too bad. Then today her pain is getting worse and my sister said she is saying some weird things, like.............'why is everything green?' and 'Whats that smell?, smells like green'.

I went over because I think her pain medication needs reviewing, I think the others are sacred of giving her the morphine tablets again because they knock her out but I think she needs them now, better to be out of it rather than be in pain.

When I went she wanted to clean herself up a bit so i got her a new change of clothes and underwear and left her to it. She was taking ages so i shouted her to see if she was ok. She was falling asleep mid change.

She wanted to talk about the funeral costs and finances,but she kept falling asleep again.

As I left I said 'I'll see you tomorrow' for the first time she grabbed my hand and kissed it and said 'I hope so'.
She really feels like its coming to an end now.

The gp is meant to be coming tomorrow.
Hopefully now the new year things will start moving. The ocupational therpay team are meant to be coming at some point to show us how to assist mum in bathing and lifting and things. If they feel it necessary they will refer us to social services that will provide a carer.
Heres the big joke............. they need to come and do a health and safety risk assessment before they send anyone to actually do anything.

Health and safety gone mad......but I do understand that if mum weighed 20 stone then sending a 8 stone waif of a carer would do more harm than good etc.

Funny, I have stayed so strong and no even shed a tear throughout Christmas and for a good while.
Just writing this blog I have had to stop go upstairs and compose myself.

I never told you what I got Mum for Christmas, well one of her gifts anyway. I had won at Church's raffle a packet of 3 photo frames. so I found a photo of me, my sister and my brother, all separately, the pic of me was building a snowman in my back garden last year, I remember Mum said that she had never seen me that happy, ever.
The pic of my sister was on a night out and the pic of my brother he was sky diving, but a picture of his face, laughing on his way down.

I put a sticker on the front of the 3 photos, now in the 3 little frames, saying 'all looking happy'

I must admit when I wrapped this present up it put a lump in my throat and brought a small tear to my eye, but just now..............I broke my heart, talking with my boyfriend about our combined parenting skills. I think its all any parent could ask for isnt it? Just that our children grow up to be healthy, well balanced and most of all happy?

The one thing that keeps cropping up in conversation is I really dont know how people with no family manage.

I read a comment on my last post, from a man who has lung cancer. You know I always thought this blog would be read by friends, and people with family members with cancer in the hope that I could say,'you are not alone'. I cant believe I was so naive, it never crossed my mind that people with Lung cancer might actually read it too.

I am honoured that he reads it, and I really wish him and his family all the best. Im glad it makes him smile form time to time, and hope I can make him smile again.

New Year

I spent a couple of hours at Mums last night, and she seems more 'with it' than I have seen in the past few days.

Wednesday, she was really bad, My sister had text me in the morning to say mum had had a bad night and that she had rang the doctor. She didnt really know who she should phone so she phoned everyone, the gp, the nurse, the macmillan nurse. Sometimes it feels like we are just bumbling our way through this.

I went over to find Mum in a lot more pain which she said was in her lung. While we were waiting we talked about the possibilities of what could happen once people started arriving. I made sure she wants to stay at home, throughout all of this. I think its best to try and discuss things like this while she is still capable of making decisions.

The nurse came first, by the time she had got there Mums pain had subsided somewhat and had even managed to get some make up on, I swear she makes us out to be liars......... lol.
We worked out the last time she had anything to eat was a mince pie on Christmas Eve.

I had to leave before the GP came but he prescribed some steroids again to try and get her eating again.

At the moment these do seem to be working, she is eating tiny amounts but anything is better than nothing.

She had been falling asleep mid conversation up until last night. You could sit there and she would say something then go quiet, when you look over her eyes are shut!
When she is sleeping her cough is very bad so very disturbed sleep, maybe that and the combination of the drugs is knocking her out.
While she is dozing though she is shouting things out which are funny yet disturbing!

Like 'DO you want stabbing? Any of you thugs?' and singing.........Boney M!!! 'Ra ra rasputin'

I know a lot of it is to do with the srugs but bloody hell......Boney M? Where the hell has that one come from?

We have been given some cream which prevents bed sores. We have been advised to put on her bum.
Mum said this is everything she didnt want to happen.......I managed to persuade her to let me have a look and put cream on. It bothered her and she was embarrased, a lot more than I was.

We have decided that this should be my designated job! Plus it guarentees that I will go and visit every day.

I have been focussing on the wedding again really to try and keep myself busy, maybe it is a diversion from dealing with all this, but I feel better planning a future and looking forward to it rather than dredding what the future holds.

Personally I hate New Year and dont get it........at all. Its just a date on a calender, people use 'its a fresh start' as an excuse...........No its not....... If you really want to make differences to and in your life you start today, not tomorrow or wait for a new year to begin. Surely its the here and now that counts? You actions today will shape tomorrow.

Either way.............Im glad Mum made it to 2011. :)

I'll take everything

Mum has had a bad day today.

Her spirit seems to have vanished. When I went over, she was in asleep in her bed in the front room. But coughing badly and bringing up a lot of pleghm.

I didnt realise she was that bad or I wouldnt have took my son. I felt guilty for taking him as I dont believe it is an environment he should be in though I know when she is having a good day he does perk her up a bit and brings a smile to her face. I have always said that when things get really bad I will stop taking him.

I didn't see her yesterday as I thought that Christmas and Boxing day was so hectic I she might want a break.

When we was alone tonight, she told me that has given up. She is sick of it, she just wants it to be all over. Sick of keeping her head covered, sick of the discomfort, coughing, pills, doctors, not eating everything. She said, 'I just wish I knew what day it was going to happen'.

She also said that she didnt really remember Christmas, she remembers everybody being there but not really much else.

Christmas day she spent most of the day dozing off sat up in her armchair, she struggled to open her presents. All of her physical strength seems to be vanishing.

I think it was all more for us than her really.

Boxing day all the family came to mums, I know we had a few real belly laughs and it was good, mum seemed a bit perkier than usual.

On the night time my sister came to my house for festive drinks but ended up in tears. What the hell am I meant to do to help her get through this?

Today, Mum's sense of humour seems to have gone. Even the cheeky glint in her eye was dimmer than I ever recall seeing it. Instead a pained expession on her face.

I think my boyfriend is worried about me, he thinks because Im not crying or openly upset by it all now that it may hit me very hard later.

Maybe he's right, what breaks my heart is when I tell my son we are going to granny's and he says 'Granny - Poorly'

It makes me so sad that he will be asking where she is one day soon and he won't understand.

I have always tried to stay cheerful throughout all this but tonight I just can't be. Im not upset, just meloncholy, unsettled, like I'm waiting for something.

Ive been listening to music while writing this and funny I never took notice to some of the lyrics to one song but I have just brought them up on the internet, they are :-

Oh these feet carry me far. Oh my body. Oh so tired.Mouth is dry. Hardly
speak. Holy Spirit rise in me.Here I swear, forever is just a minute to me.I'll
take everything in this life.I'll join everyone when I die.Have my body. Have my
mind. Have my coat. Take my time.These I borrow. Borrow so far. Turn to dust.
Fall apart.Here I swear, forever is just a minute to me.I'll take everything in
this life.I'll join everyone and understand.'Cause all men die. 'Cause all men
die.I'll take everything in this lifeI'll join everyone since I'm gonna dieI'll
take everything in this lifeI'll join everyone 'cause all men die

If you want to llisten the song is called I'll Take Everything by James Blunt..........................maybe thats why Im so sad tonight.

Christmas Eve

Well here we are, its Christmas Eve, and Mum seems to be doing ok.

We had her hospital bed delivered on Wednesday...............but it was just that............the bed........not a matress in sight! After a phone call I was promised the matress for Thursday.

So I cleaned all the front room and got her bed into place.

The slow release morphone pills dont seem too bad. but the nutritional drinks she is struggling with, saying they taste awful.
I was having a look at the website for them, fortisip they are called, they do different varieties so I think she just has to keep trying them.


Just as I was cleaning the house, a pipe burst in the garage. What joy! Between teh family we have managed to do a make shift job, but really makes me wonder how people with no family cope if they are in the same situation as mum.

When the Macmillan nurse came I spoke to her about my sister doing too much and not getting a break.
When we were all together she mentioned a local hospice to mum, I think at first mum thought she meant as an in-patient so mum was saying no i dont want to go.

We didnt realise that they offer a day visit where they can come and pick mum up and take her, look after her, and then drop her off a few hours later.

While she is there she could have spa's and relaxation therapy's. They have hydrapools and things. Sounds really good.

Apparantly on reading the website they can offer a lot of support for my sister too. Practical and emotional advice and she also can go and get her nails or hair done.

We have asked the Macmillan nurse to refer us. I think it will do everybody some good.

Yesterday the matress came and I went and bought new bedding so she is all set up now for Chrismas.

I think this year will be a weird one. But maybe there is a greater lesson to be learnt........... We know this Christmas will be our last as a complete family...........many people dont know so maybe we should treat each day like its our last.

Unpredictable

Mums illness is just so unpredicatble.

One day she seems perky and laughing the next day she could be really bad and spaced out.

Today the bed should be getting delivered so this morning we are moving one of the sofas out of the front room ready.

She doest really move off the sofa anymore.

The gp came yesterday and as the pain in her chest is getting worse they have started her on slow release morphine pills, that should release enough morphine throughout the day. Today she will start these pills so we'll just have to see how she gets on with them. We can still give some of the oral morphine if need be.

They have also given her a prescription for the nutritional complan type drinks.

She is eating tiny amounts now but still not enough.

The charts I made for when we administer the drugs I have slightly adapted and we now write down everything that mum has, food, fluid, drugs so when health professional come they can actually see what she is having. Looks like this is one of the better ideas I have had!

Monday we got together and discussed the funeral arrangements, and we have made some firm decisions as to what she wants to happen.

We did manage to laugh throughout all this. I found some readings that i had book marked
and I sat at the side of her, turned to a page, let her read it, if she cried it was a possible! no tears - it aint going in! Im certain now that it will a beautiful funeral and exactly how she wants it.

We have decided to have Christmas at her house. She doesnt know it yet though! I cant see her wanting or even having the energy to come to either mine or my sisters house.

Mum said last night that all the chemo had been a waste of time - I tried to explain it hasn't been though has it? She would have died before now if she hadnt gone through the treatment. So of course its been worth it to buy enough time for us to have a few more months. Not a lot of people have the chance to bargain for time like that do they?

Last night when speaking with my boyfriend and I was expressing my concerns about my sisters health, he said that maybe she was dealing it by letting it all ou and crying whereas I appear to be taking it all in my stride. My reply was a simple one - 'Its just the natural order of things'

I am trying to write something for Mum so there are times when I go quiet at home because my mind is ticking over of what I want to write.

Useless

I feel so useless tonight

Mum seems to be getting worse, I saw her on Friday and then again tonight. Tonight she seems drowsy, falling asleep at the drop of a hat.

Friday she was fine, perky and still herself, laughing and making jokes.
There is a really weird patch of hair central to her head that has grown back, in a perfect square! We were laughing about it.

Tonight though, I dont know, she hardly spoke and was just watching television not really bothered who was there and not really with any of the conversation.

I cant spend as much time there as I would like as my son gets bored easily and I can't settle with the dog in the house. I feel so useless, with the practical stuff.

The bed is being delivered on Wednesday which I think will be a good thing. I know that my sister said that she has been drifting off to sleep on and off all day.

I had a look at how much morphine they had all been giving her and it seems ok and in fact could do with being increased as she is in pain in her chest today and also upper stomach.

She didnt seem bothered that we were even there today.

I really get the sense its all coming to the final stages.

Tonight I have been reading a book and choosing readings for her funeral. Tomorrow I plan to take my pc round with my internet connection while my boyfriend babysits. We need to listen to some music but sometimes Mums house is so hectic, you dont have the time to get emotional so I think this will be a good opportunity to maybe reflect & choose.

I have planned some really great readings and music that I will present everybody with tomorrow.

I know Im not useless, far from it, maybe my role in all this is to be the conducter to the orchestra, ........but it doesn't stop you from feeling useless though does it?

Pulling

The GP has started Mum on some steroids to try and increase her appetite.
Also she has a bit of thrush in her mouth which maybe why everything is tasting funny.

She started taking the steroids Wednesday and so far she is eating a lot more than she has been doing. Even though they are still minute amounts like 4 chips, half a jelly and a couple of pieces of pineapple it is still a great deal more than Sunday and Monday.

My sister has been staying there all the time now as Mum needs 24 hour care.

Even little things like getting off the settee she cant seem to manage.

Mum has requested a bed to be put in the living room so one has been organised from the district nurses.

Im hoping that they will let us know when this is going to happen as I would like to be able to give the front room a thorough clean before we get a hospital style bed in there too!

We have been keeping records of what mum is eating drinking and doses and times of her medication all on the sheet that I designed.

Today was a weird day............. Last night we had a brief discussion on the phone about mums funeral arrangements. So we decided that today we need to sit down and maybe talk about some things. There is a lot to think about really.

Mum had been to a funeral at the church I go to not long after her chemo started and a couple of readings she thought would have been appropriate. She wanted to read them again so I spoke to my friend who will be conducting the service and she came over.

Mum has decided on what she would like to be laid out in when the time comes and we are talking about other arrangements too.

I guess to some it may seem strange to discuss this in such detail but dont you think that is a privelige to be able to orchestrate your own funeral? Of course it is upsetting but its better than a bunch of people deciding and guessing what you would have wanted.

I hate that turn of phrase when someone dies ' its what they would have wanted'

If I have ever used that to any of my friends, then I am publically apologising right now!

It has also thrown up questions about our beliefs as a family and also mums beliefs.

Tuesday when the Macmillan nurse came, we talked about our feelings and Mum and my sister were crying, i was shedding a few tears myself although stiffled.
I was suprised that my sister said it was the first time she had seen me cry and made a joke that she had 'finally broken me'

Funnily enough the last words from my last blog (written on Tuesday morning) were pleading with my sister to enjoy what time we have left with her. If I didnt know any better I would have said the Macmillan nurse had been reading the blog herself. She almost quoted me word for word when she spoke to my sister.

I am worried about her more than anyone really, she is maybe being over attentive, even mum is worried about her too. The fact that she appears to be running herself ragged trying to do everything.
When I have spoken to mum about this I think maybe its just her way of dealing with it.

I feel a bit useless this week really, as I am very limited as to what services I can actually provide with small child in tow and having to stop for meals, naps and nappies, and trying to keep him entertained.

On the positive side though, having him there makes light of certain situations.

I cant believe at two and a half he was flirting the Macmillan nurse saying ' Cheers Darling' to her.
She asked him if he would like to see her again ' Morrow' was the answer
She asked what time - 'past eight' he said
Where are we going she asked - 'Post office' he said!

So there you go, my son pulled a nurse and he isnt even out of nappies! :)

Morphine

Apparantly Sunday Mum didnt eat or drink anything.

The pain in her chest where her lymph nodes are, is hurting her, she says its like swallowing razor blades.

As I was away for the weekend I didnt get to see her until yesterday.

After I took my son to playgroup there was a phone call from my brother saying that mum seemed pretty bad. He has been trying to give her something to eat and drink and she doesnt want it.

Myself and my sister both went around to mums.

I asked if we had another appointment at the oncologist and we have, but its 6th January 2011 and they said that she doesnt have to attend if she doesnt want to.

I was just thinking do we need to know whats going on inside her chest? Do we need an xray to see the extent of the spread? Surely if its now causing pain this means thats its either grown of its pressing on something. What the hell is going on in her body?

I was trying to establish why she wasnt eating or drinking, was it the taste? The pain in her chest? Frightened of being sick? Just not hungry? She couldnt really give me a proper answer so I can only assume that its a combination of all of them.

I was trying to explain to mum that she really does need fluids. She can manage without food for a few days but you just cant survive without liquids. I said that if she didnt try they would probably get her an intravenus line in and a bag of saline.

I asked about the pain in her chest and she said it was still hurting but not as bad as it was the day before, We all agreed that maybe we should start a very low doseage of morphine just to take the edge off for her.

We all feel that once you start on Morphine it is the start of the slippery slope and a rapid descent to deaths door so we agreed on a very low dose.

I read all the instruction leaflets that came with the bottle of Oramorph. The instructions said take 2.5 - 5 ml maximum of 4 times a day.

I know after I had my back operation in 2004 that in the recovery suite they gave me some morphine and it was great! It was all so hazy, I remember being able to hear what was going on and not even have the energy to open my eyes longer than a couple of seconds.
I remember after they had give me some I was lying there and hearing the name of one of the nurses through the drug induced stuper I was laughing and the nurse asked me what was funny, I asked 'Is that lady REALLY called Wilma?' When she said yes I was laughing. All I could think of was the flintstones.

So in light of this inside knowledge about morphine and knowing that mum has to keep lucid enough to drink something we decide to try her on half a ml.
They give you like a syringe (without the hyperdermic) to get it out of the bottle.

I measured it to half a ml and she squirted it in her mouth.

She said it didnt taste too bad really.

After about half an hour she asked me gor a little bit more - which my sister measured out for her, as it was the first time she did it she asked me if it was the right amount in the syringe.

So in total mum had 1ml of Morphine.

Not long after she fell asleep.

The Macmillan nurse was scheduled to come today (Tuesday) anyway. My sister phoned and left a message saying that we need possibly a few things with her visit, like a build up starter pack etc.

We have managed to obtain a visit from the GP aswell as some point today.

As my brother is on nights at the minute my sister stayed at mums last night, when she arrived she said mum was drugged up to high heaven.

Apparantly my brother had give mum a 2.5ml dose of morphine at 7pm, instead of the 0.5 - 1ml we had agreed on.

My sister said that mum looked like Stacy Soloman, her teeth looked too big for her head cause she was SO drugged. And she was falling asleep before getting to bed.

I spoke to my sister on the phone last night and I have now made like a drug chart to keep with the morphine which says day, date, time, ml and who.

Hopefully this should now avoid any future mishaps or overdosing.

This sudden deterioation does leave me questioning whether mum will actually make Christmas or not, if she does, is she going to be lucid?

Im ok, Why am I not upset by all this? Sometimes I feel very detatched from the situation and matter of fact about it all. When people say, 'oh im so sorry to hear about your mum' my response is alway the same ' well its part of life'. I dont know if people are shocked by this or not but the deathly silence after my response gets me every time.

My sister cried yesterday at playgroup when someone asked about my mum.

I want her to enjoy what we have left, theres lots of time 'afterwards' for tears. I cant do anything for her though but let her deal with it her own way. Come on sis..........enjoy every minute you spend with her. Please....

Regression

I spent all day with Mum last Sunday.

She has never been interested in going to the Trafford Centre to see Father Christmas in previous years when I have took my son, but this year she wanted to come.

So Sunday after church we picked her up and took her back to my house before venturing out down the motorway

We spoke a lot, about different things, she asked me if I thought man would ever find a cure for cancer. I don't believe they ever will.

I think death is natures way of ensuring the continuation of the human race.

She said she was relying on me to stay focussed and not fall apart through all this.

I know its bad but I know there are people out there who are a hell of a lot worse off than us and Mum.

I told her about that postpals website for the terminally ill children and in particular the story I read on there that broke my heart about a 9 year old girl whose mum had to tell her a week before her 9th birthday that her brain tumor was inoperable.

Can you imagine having to tell a child they are terminally ill?

It truly doesnt bear thinking about and I hope that its a position that any of us are NEVER in.

It was then I cried, and my eyes a welling even now, just thinking how horrible life is outside our windows, in the big bad real world.

That line from Band Aid keeps coming to mind this week 'theres a world outside your window and its a world of dreaded fear'

I thought I was doing well, since my tummy bug I hadn't taken any of my antidepressants that I have been on for a year, so its been over 2 weeks now.

I honestly didnt feel like I needed them.

But then not being able to sleep properly, my emotional outbursts on unsuspecting people, being moody and seemingly angry at little things and tired all the time. I have started to take them again.

So WE went to the Trafford centre to take my son to see father christmas.

He was booked up! So we have to make an appointment to go again!

But pushing Mum in her wheelchair around I think I get it.

Its a regression. Maybe is Christmas, maybe its the cancer, but this inner child seemed to shine through.

The cheekyness and glint in her eye, the enjoyment of seeing my son on the carousel, almost like not a care in the world. Maybe its escapism too.

For 30 mins in the christmas lights and atmosphere she forgot about the cancer.

Physically, she isnt eating a great deal anymore and she coughs until she is sick. She has lost a stone in weight over the past couple of months.

She is sleeping about 12-13 hours a day now.

She has asked me what I think will happen towards the end. I know she hasnt started taking the morphine that she has been given. I really believe that once you go on morphine it seems to speed up the deterioation, so we have all agreed that she will only start it when she feels its absolutley necessary. I think, and I know Im no expert, and maybe Im hoping, that she will just sleep more and more and gradually fade away.

I just feel a bit emotional today, last night I iced my Christmas cake and made mince pies.

These traditions are something my Dad has passed on to me and I suppose it comes back to this regression thing again.

Finding comfort in things from our childhood .......from a time when we felt safe....... our parents were invincable.........and everything was right with the world.

Emotional Outburst

Where do I start this morning?

A lot of thought shave been going through my head since the last blog, so it may be an epic Im afraid!

Is it really better to know? We are watching our loved ones die slowly. When people die unexpectedly maybe we have more of a chance of remembering their vibrance and them before.

I dont my memories of my mum to be the the last few months of vomitting, bald heads, death jokes, coughing, chemo and crying.

I have come to the conclusion that either way sudden or expected isn't good but there are positive's in knowing isnt there?

My sister is an absolute mess. She isn't taking this at all well. She seems to be also under the impression that I am coping remarkably. Am I?

I believe that we will all be a mess but all at different times. If we all collapsed together who would pick us up.

I have also seriously been doubting the existance of an afterlife and questioning a lot of things.

Those that know me, I do attend church regular and am in fact a Unitratian which allows people to explore there own spiritual needs.

What if?........................ What if the term 'eternal life' isnt literal?

What if it means that we live on from our actions and remembered for eternity by those who knew us. Making our mark on the world so so speak.

After my dad died, my mum suddenly began to notice mannerisms, language and actions that I did that were exactly the same as Dad. He lives on through me and everyone that knew him and their memories.

As I was driving to the Doctors regarding my own health I switched on the radio, a bunch of songs came on the radio that were almost like a personal message to me. Dad's funeral music was the first, which incidently was 'You are not alone' by Michael Jackson, the next song was a song that will always be me and my sisters song, 'When will I see you again' I never realised until recently that this song was actualy number one the very day I was born. Funny how later in life it has become 'Our tune'

Made me think that there IS something, what I guess we wont know until its our turn.

I have seen mum and what is difficult is that she looks SO well!!! I have attached a photo taken on Saturday 27th November 2010. Its hard to believe that in a few weeks I wont be able to pick up the phone, call around to her house.

Saturday I seemed to be so angry and I exploded. Someone phoned me and started moaning about their Mum, about all the niggles that they had with her, how life had been so unkind because.........because..........she............she ............I .........I

In the end..... I exploded and told them the news about Mum, and even shouted down the phone at them saying they were being so selfish, they should be grateful to have a mum and I slammed the phone down.

Part of me felt really guilty, it was almost like a red mist though with me. I honestly cant remember the conversation on either part! It was completely out of charactor for me.

I have been feeling a bit guilty and self indulgant too writing this blog so I have refrained from writing for a couple of days. But this morning I read a comment to my last post and its nice to know that it is having a positive effect on some people out there too.

Today, sees the first anniversary of a friends death, When I went to see her in the funeral directors last year I was inspired to write this poem. I think that its more relevant than ever today. My thoughts are with her family today, especially her daughter.

All we are made of is flesh and blood

The human spirit isn’t easily understood

What makes us complete is our soul

Without this we are far from whole

Electric impulses animate and make us live

Our hearts that beat yet learn to forgive

Our bodies just a vessel that encases

Our deepest thoughts and inner voices

Who we are is not flesh and blood,

Miraculous as they are, we are flawed.

They are not designed to live for long

It’s our spirits that keep us strong

The love we feel and the rest inside

Cannot be reproduced, I think many have tried.

So who am I? Not this body that I own

But my laughter and smiles, I willingly show

My ability to Love, my thoughts, and my fears

The hurt and emotion, the pain and the tears,

My kindness and to try and understand

The way it makes me feel when someone takes my hand

When my vessel dies what will people say?

What will they remember, when I go away?

Will they remember my appearance, and how I look?

Will they remember my body? I think not

What do you want to be remembered for?

I would wisely guess the answer, for who you are.

For your warmth? Compassion? For bringing a smile?

Its worth thinking of, for a little while