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

bugger

I haven't written for a few days because I have been so poorly. First with a cold, then my son had an upset tummy which I have now got.

As a consequence I havn't seen Mum because Im frightened of making her ill. Now doesnt that sound stupid? Especially when you hear the outcome of the meeting with the oncologist.

My sister took Mum for the meeting and the long and short of it is........there's nothing else they can do.

The cancer on her adrenal gland hasnt changed in size, the one in her lymph nodes has grown and the main one in her lung has grown back bigger than it was originally, before all the treatment.

They have started her off on low dose morphene and said that it could just be a 'few short months'.

I dont know how I feel right now. At first I thought that all that she had gone through was for nothing, but I know that without all the chemo she wouldn't have lasted this long. So it hasn't been for nothing. Has it?

The other week I saw mum and she was really upset saying what is the point in delaying the inevitable.

I phoned mum to see how she was last night. I wasnt sure what to expect. But what I found, suprised me. She wasn't solemn or upset and strangly upbeat and chirpy, she was more bothered about the financial side of things and funeral expenses.

She even made a joke about buying a smaller turkey.

I believe this to be called 'gallows humour'.

There no question then is there? This WILL be our last Christmas together.................bugger.

Lead to Feathers

The news now is that after her Xray on Thursday, the cancer in her lung has grown back, they wern't expecting it to come back so soon.

They said that the chemo she had last time was the strongest you could have.

Next they need to do a CT scan next week and when the results are in for that they MAY be able to present her with some options.

Im not sure if Mum wants to go through any more, but I guess that we need to find out what these options are first.

They have give her some different pills and by all accounts is feeling a little better right now.

My heart felt like it was made of lead the other night. Funny how the emotional can become the physical. Just so heavy............. I had to leave the dinner table, I lost my appetite and I couldnt control my tears.

As I put my son to bed, I sat there in the dark and started thinking about things.

Who are we to play God with people's lives? Is it selfish to keep going with treatment when in the end you know its pointless and that the outcome will be the same, surely we are just delaying the inevitable?

In the end I think she went through all this treatment just bargaining for time. And yet what have we done with it?

I want her to keep fighting for my own selfish reasons.........like I said in the last post, Im not ready for her to go yet. Theres too much for us to do and see. I want her to be there at my wedding in June. I want to have a happy Christmas without the fear that it might be her last. I want her to see my son grow up.

When I come downstairs, my boyfriend started talking about the wedding arrangements.

As we talked, my heart changed from feeling like lead to being as light as a feather. Im so glad I have someone that has the ability to do that.

Friday, I think I managed to see things a bit more rationally.

After talking to my friend who's Dad has just passed, I feel grateful that the doctors have been able to at least try and extend her life. As sad it is, and I'm trying to help her cope with her grief, it is has helped me to put things in perspective immensly.

Even though it could be start of the slippery slope for Mums health............we knew this.
We knew there was no cure, we knew we were just bargaining for time.

I know it isn't over yet, there may still be another option. What, I do not know. I guess we are back in this limbo again until we have another meeting with the oncologist.

I'm Not Ready

Got to say that today I'm very worried.

The oncologist has brought mums appointment forward. It should have been next week but they have got her an appointment today.

Her cough is getting so much worse and she is being sick all the time but just bringing up froth and making strange noises.

She will have another X ray today and a meeting with the oncologist to see whats happening.

Last night we were watching old family home movies and she looked so well on them. Healthy in fact. I suppose its only when you see them that you realise just how ill she looks at the minute.

I know that there will be a downward spiral in her health eventually but I just hope to God this isn't the start of it............ As rational and open I have been about it all so far..........I'm not ready

Good News / Bad News

Which do you want first as it's been a week for both?

The good news? My colposcopy is ok for the time being but I need to return in 6 months for another check.

The BIG news............I'm getting married!

Mum is really excited about the whole thing as she really like my boyfriend and it gives her something to look forward to. Its booked for June 2011 so only a few months away and I think the time will fly by.

Bad News? Well Mum hasn't been too good really. She keeps being sick and the cough is back.
I saw her on Thursday to tell her about the wedding and she shown me how her hair is doing.
Its really weird, its started growing back where they didn't do the radiotherapy on the brain. Just a square like patch on the back of her head.

Yesterday..............heard the sad news of a friends Dad that has now passed to this awful disease.
Funny that someone I only knew of, hearing of his passing, brought tears to my eyes. Mainly for his daughter and devastation the family must be feeling.

If anything positive can come out of this its that I feel like I have formed a good friend.
Over the past couple of weeks we have exchanged a few messages and I have really tried to offer words of support. Although I know that nothing I could say or do would make her pain and despair go away, I wish I could, this is truly the worst part of life isn't it? For those left behind, no words of comfort can even begin to heal. So what can I say? But be there if she needs me.

When my own Dad died the best thing that anyone said to me was this 'I really don't know what to say, so I won't say anything at all'. It has always stayed with me, as it was the most honest reaction anyone had. I know everyone was sincere at the time but at the time it just seemed like a string of cliches coming out 0f everyones mouths.

I must admit that slightly selfish, there was also a heaviness in my heart as in the midst of my happiness of looking at honeymoons and wedding dresses, this jolted me to realise that Mum might not make it to see the big day.

Mum was on a real downer yesterday too by all accounts. I think she is fed up of feeling ill all the time.
My sister is taking her shopping today so will see how she feels after that and we'll go and see her.

Family Comes First

Well its been a funny old couple of weeks so I hope todays blog doesnt waffle on too much.

Last Wednesday I had the day off work to go and have my colposcopy at the hospital.

As my boyfriend was off work too, we went together. As there is a park at the back of the hospital we deceided that he should take my son to feed the ducks while I was in 'assuming the position'.

My boyfriend knew that there was something wrong. As we pulled into the car park, I watched him putting the wellington boots on my son.
He asked me if I was ok as I seemed quiet.

It was a cold but sunny day, the autumn leaves were everywhere.
My son was excited about the prospect of feeding the ducks.

All of a sudden I felt so sad. All my mothering instincts came to the surface. No matter how much I want to nurture and protect my son, I am never going to be able to protect him from my own mortality.

As he is only two, if what I was about to hear was bad news what would he remember of me?

This led me to think about what being a Mum is all about. What I think about my own mum and my own relationship with my son.

My childhood memories, I really dont recall my mum being there. All memories, I was with my Dad. When I have spoken to mum about this, she doesnt remember.
What would my son remember when he grows up?

I feel like I have missed everything, his first steps, his first word, and now pedalling a trike at playgroup. He waves to me every morning, and he tells me every morning when we wake up that I am going to work.

I love him so much, sometimes it feels like my heart is breaking.

Only the other week he fell over and hurt himself, he didn't run to me for comfort, but my sister.

Made me start to question life itself, what is it all about?

I suppose it has been staring me in the face all along but I have been wearing blinkers.

My family is by far the most important thing to me, you can't buy or reclaim days.

A weeks wage can't buy the look on my sons face at the thought of feeding the ducks and jumping in muddy puddles.

It all started to make sense to me. I NEED to make every day count.

So..............I have quit my job!

My last working day is Christmas Eve, which I think is perfect timing. I am curently looking to buy a pair of Wellington Boots of my own.

Friday night we all went to see a firework display and a funfair at a local park. Mum in her wheelchair, my son on my boyfriends shoulders, my sister and her daughter. It turned out to be one of the best weekends ever.

We were a proper family.

One In Three

Im happy to say that weekend was really good. I have attached a photo of my niece and Mum taken in the back of the car on Saturday night.

We all decided to go to Blackpool to go to the illuminations. Mum was very quiet most of the evening but she managed to have a burger in Macdonalds.

She has been feeling sick at the mere thought of food.

He cough has also returned but now being sick froth at the end of a coughing incident.

When she went to the chest clinic on Tuesday she was told that they could see something on her x ray but was too soon to be the cancer growing back.

Was more than likely to be an infection. So she has been given some anti biotics and see how she gets on, another 4 weeks and she will have another C.T scan, X ray and another appointment with the oncologist.

Its been a bit tough for me this week as I have my own health issues that could be quite relevant to the progress of this blog.

Ill give you a brief run down.............. When I was 17 (a long time ago now!) I had an abnormal smear, I was told by my GP that it was nothing to worry about and to go away "you silly girl"

When I left home I got myself a new GP, you maybe suprised to learn it was in fact Dr Shipman (yes the GP that bumped off a couple of hundred of his patients)

He repeated the smear and pretty soon I found myself up having laser treatment for cell which were CIN 1

Having many smears over the years, a lot come back normal, a few slight changes but then returned to normal.

Then in 2007 I was diagnosed with these abnormal cells again. Treatment was booked but then I fell pregnant. So treatment was deferred until I had my son.

I had a treatment called cold coagulation in October 2008 and had a couple of normal smears since.

I was told 6 months ago that the last one shown some changes but they hoped they would revert back to normal on their own.

After another check.......they havn't and now its looking like I need treatment again for these abnormal cells.

SO.................now I give you some background........On hearing about pending treatment on Tuesday, I seem to have got a bit down about the whole thing.

Statistically ONE IN THREE people are directly affected by cancer, thinking about our trip to Blackpool on Saturday night.....there were 7 of us in the car...........

I know that 'abnormal cells' dont mean you have cancer, but there is a real chance they MAY become cancer and I don't think anyone can blame me for being very wary given all my history.

I hate all the waiting............In the back of your mind you always fear the worst. I'm so sickenly happy at the moment I just waiting for some tragic thing to happen to blow it all apart.

I suppose that all this that has been happening to me feels insignificant next to whats going on with Mum, but maybe it has also given me a tiny bit of insight into how mum was feeling when they were prodding her all the time trying to secure a diagnosis.

Today though, I feel fine. On top of the world in fact. Like I can take whatever life might throw at me. Bring it on!

Cancer may have put a huge dent in my emotions but I REFUSE to let in ruin my life

Well last night I think we had a breakthrough, Mum came to my house for an hour.

It was slightly awkward but the conversation went ' I got a new cancer victim scarf'

I replied ' I got a new cardigan'

Funny my boyfriend stayed out of the way and went upstairs for the entire duration if her visit.

He said it was family stuff and that he shouldn't be involved, but he is part of the family now and I think judging by the conversation we never even spoke about the issues that had led us not to be talking in the first place.

It was just normal conversation.

I was suprised at how well she actually looks, I was thinking that after a month of not seeing her I was expecting her to have deterioated. I think she actually wanted to stay a bit longer but I said I was doing tea and bathing my son etc.

So we'll see what happens this weekend, whether she come up again, I think it might take a bit of time to rebuild this, but we have made a start

Taking its Toll

Its now been 4 weeks since I spoke to Mum.

I understand that this radiotherapy on her brain has really taken a toll on her.

I have been told that she is very lethargic and that her hair will never grow back as they have zapped her full head with the radio waves.

Her cough seems to have come back and is feeling a bit sick,

What I was reading was that when you have radiotherapy on the base of the brain this stimulates the areas that makes you feel sick.

After talking with someone about the blog last week, I decided that as a last attempt at getting through to mum to print it all off - in order - and made it like a book, I put it all in a folder and gave it to my sibling to give to her. I wrote a note to say - read it ALL

When I was printing it off and putting it all together in the folder, my eyes caught a glimpse of a paragraph that choked me.

Maybe if she read it she will understand what exactly it is doing to us all and this not talking to me now is getting silly.

Yesterday I was going to go and see her but now all thats in the back of my head is the 'note' saying "stay away from me"

What if I went and was greeted with the same sentiment? If that were to happen then there really would be no going back from that, I think.

Rejection from a parent? How the hell are you meant to cope with that?

I have been told that when she is feeling a bit better she will come and see me, but I also think, what if she doesn't feel any better this time?

What if this is the start of the gradual decline in her health? So one of us has got to put a stop to all this.

Best Of Intentions

So here we are the eve of Mum's radiotherapy treatment.

Tomorrow she is going to have preventative treatment on her brain, it is the most likely place small cell lung cancer spreads next.
The treatment involves a plastacast being made of her head and turning this into a mesh or perspex mask with just nose and mouth exposed.
When all this is done, and placed on her head, it is then all attached to the treatment table, as it is vital that her head doesnt move during treatment.

All sounds pretty scary and I know that Mum is worried about having this treatment.

It has been nearly 3 weeks since I spoke to mum, I have sent a couple of peace offerings and was going to go and see her, but today I have arrived home from work to find a note shoved through my letterbox from Mum telling me to stay away from her.

All this because I told my 'sibling' some home truths as I wanted desperately for them to be able to stand on their own two feet.

All done with the best of intentions, to try to enable them to cope with a life without Mum, when the inevitable happens.
Some would say that maybe it wasnt my place to incite this, but if I didn't speak out. Who would?

If she wants me to stay away, then I will. I just hope she realises what she has done.

Radiotherapy

Well after my last blog. Last Friday, I went to Mums and we seemed to resume our relationship, Saturday we went for breakfast but then ended up in another disagreement and I havn't spoken to her since. By the same token she hasn't phoned me either.
Whats stupid is that it's all because someone else has caused all this, not anything to do between me and mum ourselves.

I believe that today she has been to the hospital and has been advised that although the main tumor in the lymph nodes in her chest has responded dramatically to the chemotherapy, the dose of radiotherapy will be scheduled in the near future.

The main side effects of this treatment is tiredness.

I need to read up on the treatment a bit more.

Words from the heart

Im still angry at a certain family member and I really don't think that can be fixed, and I know that I was wrong for taking it out on Mum by disowning her too. But I think I was just so angry at her for not taking control of the situation, I just wanted her to realise how serious I was about my grievance with this family member.

The problem is I am so stubborn at times and Mum hasn't phone me and I havn't phoned her.
I can really dig my heels in when I want to. Then things tend to spiral out of control and get left too long to make things up again.

Tomorrow, September 11th as millions of people mourn the loss of their loved ones in the American attack 9 years ago, my family mourn my Dad who died 11th September 1996.

As every year that passes and I watch the footage of 9/11 and listen to the last desperate phone calls of these people it send cold shivers up and down my spine.
Im sure their families would give anything to spend another week with them and heres me, wasted a week literally cutting my nose off to spite my face.

My thoughts on posting on the blog havn't changed, I do think its a good thing. It isnt really about mum and her illness anymore although it is what instigated the blog, but its more how we are all affected by it, physically, mentally and emotionally. Especially me, as it is my writing after all.

Its about my attitude to the situation and to life (and death) itself, sorting out my own head and setting out my own emotional needs and helping me work out my priorities in life, which of course, I think the moment I became a mother, my whole attitude to life shifted dramatically.

I believe through cancer support sites and listening to friends views on the blog, that it is important to continue.
I cant be verbally trashed by a family member for writing this blog as what I say on here comes from my heart.

Words from the heart shouldn't be stiffled or censored.

To Delete?

I'm really wrestling with this at the minute, to delete this blog or not.

Well let me just say that the weekend saw a family feud that I can't really go into detail about but a few home truths were said.

This has left me thinking about the blog and whether I want to continue.

My hand did hover over the 'delete entire blog' on Saturday, just one click away from removing some of the most honest words I have ever written.

I went to church on Sunday and the opening lines of the service were from Guru Nanak,

"There is but One God, His name is Truth"

This left me thinking all day:

How can I be wrong for speaking the truth? Its not wrong at all

I need to be true to myself and stick up for what I believe in, despite the consequences.

I need to mull this over for a few days so I can't post any more until then.

Being Silly

I'm pleased to say that mum seems to be doing well this week.

She stayed at home on Saturday as these weekends after a cycle of chemo just are a non starter really.

We all went round to her house on Sunday and had a really good day, a good laugh too, though I think it took it out of her in the end, all the laughing. It was just all a bit silly really. Laughing at a blow up chair that had started to deflate and my boyfriend sat on one side and I jumped on the other, as I am significantly heavier than him, he was being flicked off his side and up in the air.

It was all a bit mad, but she said she hasn't laughed that much in ages, and she also said that she has never seen me so happy........ever.

As we all left I think she started to get a bit tired. And Monday when I phoned her, she was still in bed.

She said she couldn't move, and her eyes couldn't focuss, she said it feels like when your 'horrible drunk' mixed with flu (the bit where you cant move your body)

Yesterday (Tuesday) my phone rang at 8am and I saw it was mum, funny that panic always sets in when the phone rings at that time in the morning.

But all she wanted was for me to call and sort her television out as it was flickering. So I called on my way to work.

Also last night me and my son went round for a short while.

She seems to be really enjoying everything at the minute and was well enough to do a 'big shop'.

She said to me last week when I picked her up from chemo that every day since we were told the news, back at the end of June, she has enjoyed EVERY day since.

Birthday Wishes

Yesterday saw my Birthday, and also the beginning of Mums 4th and final cycle of chemo.

I havn't blogged for a couple of day because I have been feeling absolutely fine about everything.

I felt a bit down when we was on holiday at one point, when we were looking for gifts to take home and when it come to something for my mum, I stopped in the shop and said to my boyfriend that it was pointless. looking for something like a keepsake, because I would be getting it back sooner than I would like.

Saturday was good, we went for our breakfast and spent all day just watching tv and chatting.

Then last Saturday night I was watching T.V and saw a comedian Russell Howard showing a clip about a website called postpals. I will give the link at the end of this blog.

When I looked at the site, made me appreciate a few things, I was reading about a little girl who is 9, since the age of 6 she has been battling with cancer, her tumor started in her leg, went to her lungs and now in her brain. The same day I went on the radio to talk about this blog, her mother had to tell this 9 year old that there was nothing that they could do for her.

Now..............doesn't that put things into perspective?

Anyway, Sunday I went to church on my own and then took mum shopping in her chair.

While I was waiting for her to get ready she asked me if I wanted to see her hair. I said yes.

I think I knew what to expect as I had been seeing the whisps of hair diminish from under her hat slowly. It wasn't that much of a shock really. We had a laugh about it because she said looked like Richard O Brian in the Rocky Horror Show, though he had more hair!

I also needed to go to another shop but we had forgotton the disabled badge to display in my car window.

As we had the wheelchair in the back, I said well we'll park in the disabled bay anyway, and if anyone pulls us up about it, take your hat off!

I think her skin tone looked a bit grey that day.

I was talking to my boyfriend the other day and said the word chemo. My son (who is two) copied the word. I know he doesn't know what it actually means, but made me a bit sad that it was now part of his vocabulary.

I think I'm making a conscience decision not to talk about it any more in front of him.

Mum was too tired after chemo yesterday to come to my house, but she phoned me and had a chat and sang happy birthday to me over the phone.

She is in for another long day today as she needs blood again aswell as the chemo and maybe more blood tomorrow too.

My birthday was low key, a quiet meal with family, its one of the first years I havn't made a fuss, because what I really want is to stop everyone hurting from this god damn awful disease, and that can't be bought from amazon, ebay or the petrol station.

If you have 5 minutes spare today please click on this link and put a smile on a childs face.

http://www.postpals.co.uk/

Remission

Well.............. Here's a happier blog post............

Followers will know that I have been away for a few days, for a deserving re-charge of my batteries.

While I was away, Mum had an appointment with the oncologist and they reviewed how the chemo was going.

They said that the cancer in all areas (lung, lymph nodes and adrenal glands) was responding to chemo and actually shrinking! They used the word remission, but I must stress before we get excited that it just means that its under better control, not spreading any further and getting any bigger. It will not cure her.

I spoke to mum on the phone and she sounded excited. I suppose the biggest fear when going through cemo is to go through all that and it not be working.

She is scheduled for Chemo again 25,26 & 27th and this will be her last cycle.

From my understanding of it they will keep reviewing her and if the cancer shows signs of growing again they will giver her another 4 cycles of chemo.

This will carry on for as long as the chemo is tolerable.

I spoke to her again last night when I got back from holiday and she sounded so well. She said she has bought herself a new scarf for her head, though apparantly my brother said that she looks like a bedowin.

We are going for our usual Saturday slap up breakfast this morning. And I can say that after my break I truly have come back refreshed and so much happier, focussed and ready to take on the world, his wife and mums canacer again.

Guilt

Well after all my whinging someone has just managed to make me feel really guilty.
Someone reading my blog on a cancer support site thought initially that I was the one suffering with cancer.

It upset me a bit, but the more I think about it, yes I know the blog is sometimes self indulgant and may look like wallowing in self pity, but I honestly believe that the blog is meant to be used as a tool for emotional release.

It is meant to be a journey of how I am dealing with this, emotionally. How mum is coping physically, and other significant events along the way.

Cancer doesn't just effect the person, but the families too and I wanted a brutally honest account of all the emotions that are involved, even the selfish ones.

Today made me realise just HOW personal the blog is to me, and how deep it does probe my emotions.

I can't feel any shame for wanting to share my felings with you all. Anyone that knows me personally will know that I communicate my feelings, thoughts and emotions a lot better by written word, rather than spoken.

Angels & Demons

I havn't blogged for a few days for the simple reason, I havn't seen mum that much really.

This demon that is my depression seems to have taken hold for the past week, so up and down.

Yes, a lot of it is to do with mum, but what can I do? I suppose ultimately the feeling of being uselessness leads to feeling like this.

Mum has been too tired to come over to my house and when she has been well enough she seems to have other things planned.

Sunday when I wanted to take her to the park, and I had chosen a park that we could quite easily push her about, she had said she was too tired. Monday - she went to the park - without me.

I invited her for tea last night but she said no.

Regular readers of the blog will know that Saturday mornings normally sees us all going for breakfast, but I dont want to go today.

Im going on holiday tomorrow so I need to do other things, plus I think that she knows im upset so if we did something today it would feel forced - like she was just there going through the motions.

However if I don't see her at some point today then its going to be at least a week before I get to see her again, and how does that make me feel? Like I've wasted time.

There will never be another day like today, there will never be a Saturday 14th August 2010 - EVER.

So last night I spent hours crying, out of frustration, anger, it was every emotion that you could imagine - trying to sort through these things in my head.

Then this leads to guilt. Guilt that my boyfriend and son have to see me like that. My poor boyfriend. Ever so supportive, but a realitively new relationship should still be romance and smelling good for one another shouldn't it? Not walking in on a Friday night to a crying hysterical girlfriend who doesnt want to be cuddled, or talk about whats going on in my head.

I suppose I also felt a tiny bit of resentment towards my son too last night, the fact that I can't just jump in the car and go and see mum, because its not just me that needs to get ready, need to get him, and stuff for him to play with, tea time, etc etc. Just too much of a chore. Now that does sound awful!!!!

Sometimes I also think, 'sod it, I got to get used to her not being here anyway, so what does it matter if I don't see her.'

So then thinking about this one - Maybe I want people when I want them? Is that a bad thing? Is everyone else the same? Is that selfish or self preservation?

Last night when we went to bed, I was thinking it's so selfish all the feelings and thoughts that I have had, come on, see things from mums point of view, maybe she wants people when she wants them too............ maybe she feels like shes wasting time coming over to my house..............she will love me whether I see her or not...........maybe we are too much alike.

Poked, prodded and touch

Mum said she's sick of being poked.

Yesterday she went for another CT scan and tomorrow is blood tests again.

I will be on holiday when she is next at the hospital for x-rays, vascular, and chest clinic, so my sister will have to do that run to the hospital. My sister wanted me to give her instructions and directions as to where she will be going on this epic day out, and mum just said, 'not right now, I'm sick of it all.'

I saw her on Sunday afternoon, I had phoned her to see if she wanted pushing around in her wheelchair with us, but she said she just hasn't got the energy, we called on our way back home,when I got to the house, she was hoovering! Claiming that no-one else was going to do it.

Then she started crying. She is so fed up of being lethargic.

What is it with our family that we are so not tactile?

Surely it is natural to comfort someone with hugs and cuddles when they are upset, but I couldn't, we never have done that as a family.

Luckily my boyfriend stepped up and gave her a cuddle. It must appear like I don't care, or I'm cold in some way.

Sitting here thinking about it, I am tactile with my boyfriend, my son, friends etc, so why not with mum?

Maybe I'm just too scared of feeling? Being rejected? I really don't know, I know when I rubbed her feet when she was really poorly after the first lot of chemo, I felt a bit funny.

We never have said what we feel, there is only one time I can remember telling my Dad that I loved him, and even then, it wasn't verbal.

For his 60th birthday, just a few months before he died, I gave him a watch that I had inscribed on the back, it just said 'I Love you Dad'.

Someone once said to me that, that one thing may have meant more than to say it every day without a second thought.

I will try and make it my mission this week to touch her. Its sounds so ludicrous doesn't it?

Tears & Rain

Well there you have it, last night was the first night that I truly cried. Maybe bottling it all up finally came to a head.

I think I knew it was coming when I re-read my latest posts.

So what happened last night to make this sudden summer shower appear from nowhere?

I don’t know , my sister came, she had picked mum up from the chemo. She had a load more appointments for me to write down, and then said that they had told her that they were only going to do 4 cycles of chemo, I asked ‘then what?’ She didn’t know

When I came downstairs from putting my son to bed, my boyfriend gave me a cuddle and this was the first sudden shower. Just from nowhere and in the 7 months that we have been together this is the first time he has seen me cry.

It just felt like that it was all coming to an end. Only 4 cycles and she’s already had 3. I think all of a sudden it became so real. The end was in sight.

My boyfriend wiped away my tears and said that we don’t know exactly what they intend to do after the 4 lots. Maybe then they will do a review and see how its all going and see if it is actually doing any good.

He said himself that she seems so good, when his dad had chemo, it wiped him out for days, but here’s my mum, just last week painting the ceiling.

I must admit that she does seem to be coping physically a lot better than I imagined.

The night before I had a friend over and we got a bit drunk and just talked rubbish all evening . This is just what I needed. No talk of mum and the illness, was great, but maybe on reflection, just an avoidance technique.

When we eventually went to bed, I had a bizarre dream, I dreamt that every member of my family went to Australia, but they had missed the plane, they were leaving me behind. I was trying to get mum another flight and made sure she had her luggage and eventually after a long trip I got her to the airport in time.

Maybe your subconscious does tell you things.

I still feel a bit emotionally wobbly today. Mum cancelled our usual Saturday trip out as she said she was too tired, she just wanted to go back to bed. She asked if everything was ok, I said yes but I think she knows me well enough to know that the tone in my voice said otherwise, I was just doing all I can to not cry.

I've been thinking about all the times at church and people have said they will pray for us,
I know when I go tomorrow I will pray for strength as usual, but maybe it's quite strong of me to show my vunerable side too, especially to those I love.

I really wish that something show stoppingly funny happens over the weekend, as I would really love to make you all laugh again, as I feel this is just all becoming a bit too low, but for now in the words of James Blunt - ‘It’s just Tears and Rain’

Exhausted

I read back yesterdays post and I may have sounded a bit angry, or in despair, I don't know which.

I'm just getting bit frustrated I guess, as I seem to be so tired all the time, and feeling run down.

No matter how much sleep I seem to get, I crave more. I have been sleeping every afternoon with my son, and still going to bed at a reasonable time in the evening. Headaches, and generally feeling like ' I can't be marthered', is all pointing to this ongoing demon inside me that is depression.

I think it's time I should see the doctor myself, having just one prozac a day maybe isn't boosting me enough.

I think I am mentally and physically exhausted.

My boyfriend is taking me on holiday in a couple of weeks, maybe a few days away is just what I need. All the sleep I can handle and hopefully come back refreshed and ready to tackle the world head on again.

No matter how much you want to take 'each day at a time', you really can't. Always thinking ahead to the next thing we got

People have always said about me that I'm so strong - days like today, I don't feel like it. I feel ready to crumble without any warning, and no cracks are showing - to anyone on the outside at least.

Mum should be in the middle of receiving blood today as her hemaglobin (red blood cells) levels are a bit low, then she should be having another dose of chemo.

I havn't gone with her today as I am at work, but maybe will see her tomorrow.

3rd Cycle of Chemo is Here

How fast is this coming around? We are up to the 3rd cycle of chemo already, I think they have scheduled 6 in total, then a blast of radio therapy on the brain, as a safe guard measure as is likely to spread there next.

I have brought my computer and am typing this while we are here!

Up to now they have put her arms in water to make her veins more visable and also suggested that she has a top up of blood when she comes back tomorrow.

Its quiet in here today, only 3 other people. They have just set the first bag of chemo juice off, and away we go, back on the merry go round again, bloods, chemo, ct's, x rays........... really the list is endless, in between all this they tell you to try and maintain a 'normal' life!

I must admit that I am very impressed with the way all this is working and the slightest thing that is wrong with her and they are on it.

Sunday, I ended up not seeing mum! After all, I wasnt feeling too good and when I phoned she said that she was cold during the night so thought it best that stay in.

We went to the park, I saw a girl there, I say girl, she was probably a bit younger than me, her hair had just started to grow back after what I can only assume was chemo. Made me really sad, even though I am guessing that she has the big 'C' and that she is or has been treated.

When I looked at her I felt symptathy........... then I got it.  It all clicked into place, why mum keeps her head covered. Its that look, the same one I must have give that girl.
A funny look, first,
oh whats wrong with her hair
followed by, aww she has a small child,
sympathy for her,
empathy for her family
admiration for seemingly not caring less and living her life.

But you know what? None of this I KNOW, I am only assuming. But Im sure if people who are reading this, those who have/had cancer will no doubt had people look at them that way, and the 'well' people no doubt at some time in their life must have looked at someone in the same way.

I know mum has said, and keeps saying that she just wants everyone to carry on as 'normal'
God I hate that word. Normal! What the hell is 'normal' about a rainy Wednesday in August (yeah, that bit might be normal as we are n the throws of the great british summer) sat in a cancer unit while they are pumping my mum full of chemo juice (as I have now begun to call it) to try and keep her alive.

I read a post on another site, written by a woman in a very similar situation to me, who said that everyone keeps asking her how her mum is but she feels like no-one really wants to listen to the answer.

I totally get that. Sometimes you feel as though people ask out of courtesy, thats the beauty of this blog - if they really want to know then they can just drop in. Im not bombaring my social network site with all doom and gloom and ramming this illness down everyones throats, this is separate.

This line will no doubt come back to haunt me, but there ARE other things going on in my life other than this illness.
It's not on my mind ALL of the time and its not ALL I talk about it and it doesn't always make me sad.

Saturday night I went out and had a whale of a time, you wouldn't think to look at me that there was anything this big going on.

Im still me, Mums still her, our lives havn't altered THAT much, we still laugh at the same things, (maybe more than before)

Still get upset by the same things. Our lives have remained 'normal'

This is truely a rollercoaster, as you may be able to tell from my tone, 'normality' is good, but then its frustrating because its not.........

That is so hard to explain and I hope that you get what I'm going on about.

I have attached a photo of mum in the park from the blog entitled 'Good Weekend'

Always makes me smile, and you can clearly see that she is laughing.

Be happy

I havn't blogged for a few days, because I have been feeling a bit under the weather.
Some of it could be alchohol and self inflicted if you get my drift. ............Birthdays and kebab's.

Mum seems to be doing ok this week, she said her dead foot hasn't returned since she has been on these meds so thats a good sign.

I do get annoyed with her at times though, Friday, when I was feeling ok, I phoned to see if she wanted to come over to my house for a while, but she said she was painting her bedroom ceiling!
What the hell does she think she's doing at all? She doesnt seem to get the drift of 'taking it easy'
But I also know that this Wednesday 4th August she is scheduled to have her 3rd cycle of chemo, so I think she rushes around this week in case the chemo wipes her out next week.

I didnt see her for very long yesterday as she wanted to go back home after we had lunch.

I have though, now seen whats left of her hair. It wasnt as bad as what I imagined. It was like fine baby hair just really thin.
I had gone to pick her up and had arrived before she had put her hat on, as I come through the door, she ran over to get her hat, and plonked it on. I said 'well let me see it then'.
She took her hat off, and I wasnt that shocked really, she looked embarassed as she shown me, I just told her that she has to remember that its just an effect of the treatment and not due to the cancer.

It's funny really isnt it, sometimes the hat is the only reminder and only tell tale sign that mum is actually ill. You easily forget that she is ill.

I dont know why, but she said she felt like she wasnt going to see us today. When I was going she said 'If I dont see you tomorrow............' I think she was trying to say something but I kept interupting and telling her that she would see us today no matter what.

Its my boyfriends birthday today and she has sent him a card, a funny one, that we had picked together that was quite appropriate. Normally she would have just signed it, but this time she had actually written a bit more........ 'all the best for the future,be happy'
when I read it over his shoulder, it made me so sad, it was just a jolt that the future won't be with mum.

A day out at the hospital!

Well what a day!!!!

Today mum has had blood tests, x-rays, ecg's and ultrasounds.
Blood tests have come back that her blood count is low at the moment and put the number 60 (whatever that's meant to mean) on it. Apparntly if it drops as low as 10 or if she starts showing signs of any infection they will do a blood transfusion.
Because of her low blood count now she needs to be extra careful not to pick up any infections of any kind.
I think now the seriousness of having a demolished immune system because of the chemo is finally sinking in with mum.

The chest x ray that she had done today has come back that the cancer in the middle of her chest is shrinking slightly although the next ct scan that she has (on 9th August) will show more definitive results. The words 'your x ray looks encouraging' are such a nice sound to the ears.

The ultrasound - well this is something else!!!. Mum had been complaining that her right foot keeps going numb and white, (as white as a corpse she tells everyone when she's describing it)
The cancer unit decided that it would be best to send her for an ultrasound, this has shown something that could be quite sinister, a blood clot.

Apparantly when someone has cancer the blood becomes thickened, then chemo thickens again and then because mum was so dehydrated after the first session of chemo this also causes the blood to thicken, this combined with years of smoking and narrowing of the arteries, has caused this blood clot.
They have given her some statin cholestrol drugs alongside asprin to try and thin out her blood and will review the situation the week after he next cycle of chemo.

All in all we were at the hospital about 7 hours.
I cant believe the amount of walking and pushing her about in her wheelcahir I have done.
First, we went from car park to cancer unit, for blood tests and consultation with oncologist.

Then we were told that the scan and x ray might not be able to take place until 1pm so we went for a walk and saw my car had been given a parking ticket! A whopping £60, obviously I was furious, I wheeled mum at high speed over to the other side of the hospital to track down the appeals office, to where I was told that I had to appeal in writing.

Taking Mum back over to the cancer unit she said "you do know Im not strapped in this chair dont you?"
Well Ive no idea how fast she thought I was going to wheel her around!

When we got back to the cancer unit they performed an ecg, then told us we could go over to the x ray unit, which incidentally is on the other side of the hospital.

After waiting a short while Mum had her x ray and we returned to the cancer unit. No sooner had we entered we were told that the ultrasound at the vasicular studies was ready for her so could we make our way over there, guess where that was? Just upstairs from the x ray department! SO again we did the trek accross the hospital. Mum said that my way of wheeling her about was not disimilar to the ghost train, especially when I come to get her through doors backwards.

We were seen pretty fast and I went in and watched as they scanned her legs. You could see, even to an onlooker that as the scanner (not that disimilar to one when your having a baby) went further down the leg the artery was narrowing and blood supply wasnt as it should be, this became more apparant when they did the non problematic leg.

We then headed back over to the cancer unit where we had another consult with the oncologist who viewed her x rays and told us the news about it shrinking.
He then told us that he was going to get a vascular surgeon down to obtain his opinion over the 'dead foot'

We seemed to be waiting an absolute age. Eventually the man came, an oriental man, who was very abrupt in his approach but very funny. Definately a no nonsense approach! Fantastic!

I asked if mum should undress from the waist down and he replied, rather cheekily, 'no Ill do that myself in a little while'

he asked mum a series of questions about any other medical history to which mum has always been healthy, he did stress that he was going to ask her specific questions and be very thorough and in return he wanted straight forward quick answers. Mum still did her thing........... "well, I was in the bath and I noticed............ blah blah................been about 4 or 5 days now..........." not the kind of quick fire answers I think he was expecting.

After his conculsion about the diagnosis he precscribed the drugs and yet again we went accross to the other side of the hospital to the pharmacy for the drugs!

While we sat in the pharmacy waiting, mum commented about the vascular surgeon, and said he was quite frightening and that she could picture him with a samurai sword ready for her to get her answers wrong, I then said 'ooo what was that programme?......................Kenco, thats it". After a short pause I corrected myself........." Tenko!!!!"

Good grief, I went off laughing, crying and wheezing to the point where the pharmacist came out to see if I was ok.
I think after 7 hours in the hospital, pushing mum backwards and forwards, getting a parking ticket for something I hadnt done, Just all added up to bursting point!

I did say to my sister this last might that I was concerned as mum appeared to be a bit jaundice in my opinion, to which my sister informed me that mum had just been at the tan wipes - 20 for £1 so looks like mums just gone a bit crazy with them.

Good Weekend

Well I'm happy to say we had a good weekend.



Saturday saw our morning jaunt to the cafe, though Mum refused to use her wheelchair to go to the cafe.



On the plus side she had phoned me at work on the Friday to tell me that her disabled badge had arrived.



After a slow walk and back to the cafe from the car park, we headed off to the park where I knew there was a brass band playing.



For this I made her get in her wheel chair, if not only for the fact you cant guarentee if there was going to be enough seats.



By this time my son, whos two years old, had become a bit tired, so I pushed my son and my boyfriend pushed mum.



We found a spot and sat listening to the band. I got up for a quick walk and when I returned, I realised that mum really wasnt doing herself any favours in this chair at all, hood of her jacket up as it was raining, but it was up over her hat, her whole appearance and body language said she was terminally ill.


I said we need Gok Wan to come and do a new show - 'How to look good in a wheelchair'


We sat and laughed on the bench as we were saying how much patience my sister has to do hair.
I commented that I was like mum in that respect, no patience when it comes to things like that. After a short pause, I said, 'well that explains why your in a hat, and Ive got a clip in hairpiece' lol


Halfway through the band playing I had to dash back home to meet someone who had bought something from me off the internet, when I returned back to meet them, they had started to walk up the road because it had started raining.

Mum was pushing my son in his buggy, while my boyfriend pushed mum, so it looked like they had a little train going.


Mum said they were having a right laugh and she didn't care that people were looking.


I still havnt seen whats left of Mums hair, she did ask me when we were sat in the car if I would like to see it, I replied, 'not right now, while im about to drive off!' Then she said that she didnt want to show me as she thinks it will be too upsetting, part of me wants to see, I feel brave enough now to look.

She said she hates the fact that at the side of her bed, there are mirrors, so now she doesnt even look, just gets up and puts her hat straight on.


Sunday saw mum wanted to go shopping, so I took her, she managed to walk around the supermarket, as slowly she is getting her energy back, from that last lot of chemo. Though she did go a bit wild in the ailses, throwing allsorts in the trolley, like she was Vivian Nicholls.

For those of you too young to know who Vivian Nicholls is, she won the football pools, said she was going to spend, spend, spend, then ended up bankrupt.


I have just had word, while typing this that her appointment for Thursday to review her chemo and have a look at her x rays again to see if everything is going according to plan has been moved to tomorrow morning.



As Tuesday's is quite an important day for me at work, I need to make contact with a few people to see what we can arrange for tomorrow, as I need to take her for this appointment.


Hopefully should be ok, I'll work around something ..................I always do.

Pandora's Box

Im sure you all don't need reminding about the story of Pandora's box.

The most important bit I think is right at the end.
She has opened the box and let out, old age, disease, war, death, then she shut the box.
A little voice asking to be let out, this was the voice of hope, hope said, you have to let me out, the world isn't complete without me.

Ive always loved this story and as a child Im sure my mum would tell you that I used to make up a dance to the story in our back garden.

It seems more important than ever now.

After joining a cancer website community, I posted a link to this blog, I have just read a couple of responses I have had, and one in particular made my eyes water, from a girl who also is going through exactly the same thing.

I knew that people out there were going through the same thing but to finally make contact is something beyond words. Lets just say it's precious. All of a sudden you don't feel alone.

This has given me new hope, that its not all doom and gloom, and although yes its going to be tough but mums cancer could respond to the chemo and extend her life beyond what we think. Its just staying positive that maybe is the key.

Nearly a year ago now a friend of mine was diagnosed with cancer, she lost her battle just a few months later, when I heard the news from her son, I cried. When I went to visit, I cried.
The tears wern't for myself, it was weird, it was the first time I had ever really shed tears for someone else.
After the doctors had taken away all her hope of recovery or response to treatment, I had some thoughts on hope.

Maybe you shouldnt give up hope, maybe you just change what you hope for.

I know that in my friends case, personally, I hoped for a peaceful, painless end.

So tonight, for mum and our family, I hope that we will get enough time to do what we want, say what we want, have some good times, hope that the cancer will respond to treatment, and stay under control, hope for many months yet.

Im sure I can add to this list, but right now this is all I can see, an image of Pandora, contemplating whether to let hope out of the box, I'm glad she did.

Selfish Old Me

Is it really that selfish of me to want to spend time with Mum? I think not but I get the feeling that what I'm about to say is going to sound awful.

But like I keep saying I want this blog to be as honest about my feelings as I possibly can, all these mixed emotions that I'm having, someone else out there in the big wide world is either having them right now, had them, or unfortunately going to have them.

Mum cancelled our Saturday trip to the cafe, then Sunday we didnt stay long because is was nearing tea time, Monday I was busy doing things like cleaning my house. So yesterday, I had arranged to pick her up later in the afternoon and bring her to my house.
She was too tired to come again. I feel like I'm missing out somehow, my other siblings seem to manage to go and visit her but they don't have a small child, routines and the small inconvenience of work.
So when do I get to spend time with mum?

I was actually quite annoyed a bit yesterday, maybe the anger was directed at myself a bit though, as my Monday cleaning could have waited I suppose, the dirt will still be there tomorrow, what does it really matter in the grand scheme of things?

Every day that passes that I don't see her is a day closer to her inevitable death, and I've gone and wasted that day, doing mundane shopping, cleaning, working, nothing productive.

I know that medically she is too tired because of the chemo, so then this makes me feel selfish.

I suppose the one good thing that Mum has said recently is this - "If someone asked me what the best time of my life was - I would say right now, the way everyone is looking after me, its brilliant."

Chemo seems to be going ok

Well so far so good, this 2nd cycle seems to be going ok, although very lethargic, at least Mum hasn't been rough with the sickness again. Part of me thinks that if she had been rough with it this time, she might have wanted to give up.

She was too tired to come with us on our day out over the weekend, but we called to see her on our way back.
She didn't have her hat on and it was the first time I have seen her hair properly, it is a lot thinner but I was suprised that her scalp wasn't as pink as what I was expecting.

I was reading on the internet that after you lose your hair you need to start taking care of your scalp a bit more, especially as its an area that isn't usually exposed to sunlight.

I think maybe we are all still in denial about the news, even me. I have been trying to be realistic about the whole thing and keep everyone focussed, yet Sunday evening just a song I heard, (Sandy from Grease, believe it or not) reminds me so much of mum, we have a recording on old chrome audio cassette of her singing it back in the late 70's. When I think hard enough I can still hear her voice, and then remember the other voices on this tape aswell, my sister telling jokes, and me answering "don't know" to everything, even knock knock jokes (well I was about 6 or 7!)
and my dad reciting a poem, a highway man came riding.
Funny I can still here it all as clear as day. Then I started to think I hope I never forget her voice.

So silly isn't it that the smallest of things can trigger this leakage from my eyes

Mum the Comic

So here we are on Saturday, the 2nd Chemo cycle is over. I went to pick mum up yesterday after her last chemo session. She had it over 3 days again.
Of course when I arrive mum is chatting and centre stage of the cancer unit.
As I approached I could hear her say 'heres my daughter now'.
The man next to mum said, ' oh yes I have seen you two before, you were down at x-ray the other week, making everyone laugh'

Mum seems to be just learning how funny she is, without knowing it.

This man remembers me and mum from when we went to the x ray department and mum was in her wheelchair, when the nurse came to wheel mum away for the x-ray I was still sat on the chair at the side, the nurse handed me mums handbag to look after. Mum said, in a loud voice 'You know you have just give my handbag to a stranger, I've no idea who that woman is'

Then later in the pharmacy, which is a very small section of the hospital mum was still in her chair and there was another woman in a wheelchair also in the waiting room. As her son pushed her, her chair collided with mums. After a brief apology and a couple of jokes about needing 'L' plates on them, mum said to this woman's son 'I Bet your more careful with your car'. Well the whole waiting room went up in hysterical laughter.

So back to yesterday, we came away from the unit armed with all the anti sickness and anti diorrhea (am I going to learn how to spell that before this bog is done, I wonder) drugs, so she should find the treatment quite tolerale this time, though I do think the lethargy will no doubt get to her again.

In the car coming home she whipped off her hat, I need to point out at this point that I was travelling about 65mph down the motorway with my window open.
I briefly saw a pink patch of scalp, but because of the way the hat had been, it didnt look too bad.

I was more concerned with the contents of her hat! I really cant explain how much hair was in there, that had just fallen out, then of course, because she had no hat on, it was just falling onto her coat.
My reaction wasnt actually to her loss of hair on her head but to the har that had fallen out!
I said 'F*** I better shut the window before a gust of wind gets in and takes whats left!'

We have planned to go for our usual breakfast at the cafe today, but its hard trying to plan things as I think we will just have to see how she feels.
Its good in a way to plan, becuase it means we are looking at the future, but we all need to be flexible because I think we are realising that plans can quite easily change.

2nd Cycle of Chemo starts

Mum started another cycle of chemo yesterday.

My brother took her for it this time.

With all the waiting for blood tests, and she needed weighing they were at the cancer unit about 7 hours in total.

I was recently asked if I believe in miracles, my answer was that I believe in every day miracles, things that we take for granted.

The way the chemotherapy works and the human body is a miracle in itself. The scans, everything, they are miracles of science.

The bags of chemo are made up specifically for mum, and calibrated to her height, weight and no doubt other various specifics, which is something I didn't know.

I think I just assumed that they had the bags of this stuff lying about and just hook it up and away you go.

She phoned me last night, I was expecting her to be a bit rough but she was absolutely full of beans, she had been talking to a woman who was also terminal and mum has seen just how lucky she is having a loving family and living relatively close by to the unit.

This woman lived approximately 40 miles away and had no relatives to bring her for her chemo.

Today's chemo session shouldn't be as long as she just has one drug today.

Hopefully I will be able to take her somewhere nice at weekend and give the wheelchair a spin.

:)

Don't let me see

'How bad is it?'

'Hope she has got her hat on'

' I don't want to see that just now, I need to go to work'

'What if she hasn't got her hat on? Will I cry? Will she cry? I cant cry, not right now, I don't have the time to get all upset, I'm going to be late for work'

All thoughts that were racing through my head this morning, while I was driving to mums to sort out her T.V before I had to go to work.

Now I see it all written down, looks a bit selfish, all to do with MY reaction, but so what, I'm entitled to my feelings too arn't I?

Mums hair has been really falling out now, just when clothes touch her, or brushing it.

Last night she decided to wash her hair. I know that when she spoke to my sister she still had the towel on her head and was too frightened to look.

So when I was told this morning to go and sort out her t.v on my way to work, I was so worried, I didn't know what I was going to walk into.

Luckily when I got there, she had her hat on. I will see what's left of her hair maybe later today, but for now, this morning I need to be in control of my emotions.

I don't know how I'm meant to react. Am I meant to just glance and pretend like nothing is out of the ordinary or agree with her how bad it is or try and be positive with her that its better to be bald than dead right now?

When I saw mum yesterday we took her some hats we had found in a charity shop, we got all 3 bargain at just £1 each. Happy days! :)

Just something she can slip on without trying to arrange her wig.

She said that the other day she had tried to put her wig on and her make up to try and make herself feel better, but as she still had quite a lot of her hair she felt like Marge Simpson with this huge pile of hair!

We do try and find something to laugh at every day and yesterday was just a simple answering machine message that sent us reeling with laughter.

Mum has never been one for telephone conversations, the answering machine had picked up a conversation between her and my brother, He only phoned to see if she wanted anything picking up from the shops, after an awkward conversation, she had ended the conversation as usual, without saying, bye, see you in a bit, nothing. Just put the phone down.

After a slight pause of deadly silence you can hear my brother say 'Hello?'

When I heard it I laughed so hard I weed a little, and I'm still giggling now at the thought of it.

I might even try and put the conversation onto tape of some description to save. It was just fantastic. And really sums a telephone conversation with mum up.