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.