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.

Why Blog?

Well, I have been invited onto the radio, to talk about why I started this blog etc
Got me thinking, why did I?

I suppose at first it was a combination of things, when people ask you how you are and how everyone is coping and of course how mum is. you start getting confused as to where you were up to with the stoy, plus relaying the same thing over and over agin becomes a bit tedious (im not trivallising it by any means) So I thought that if all information was in one place then people can just log in and find out whats going on.

Also talking to a friend last week, they also raised another good point, from my friends point of view, if they constantly text and ask, it becomes weary, but then if they dont text, it looks like they dont care, its hard to know the right balance.

Then I realised that I was getting a bit frustrated at my feelings, I may have appeared a bit unresponsive to the news about mum, maybe we had waited so long for the definate diagnosis I thought 'right there it is, THE news, right then lets get on with it'

I was slightly envious at my sisters ability to be so emotional about it all. I thought there was something wrong with me 'Why wasnt I an emotional mess? She's my mum too'

Then with all this comes guilt. Because I didnt shed any tears (and I havn't, not really, a few eye watery moments but not broke down completely)

I was using my writing as an emotional release, seeing it written down and talking about my own thoughts on things does actually help.

So then that got me thinking.............. I did a bit of research and in the UK alone nearly forty thousand people are diagnosed with lung cancer each year. 20-25% are small cell lung cancer (the same as mum)

If you have trouble visualising 40,000 people let me help you. At maximum capacity the men arena in Manchester holds 23, 000.

So take all them people, their friends, families, colleagues, etc and try to imagine all those people.

So laws of averages tell me that what I was feeling wasn't unique.

I only wanted the blog to be brutally honest, whether it be to share our laughter in our funny moments, or cry with us when we are painfully low.

It certainly is a rollercoaster of emotions. Like the corkscrew, one minute your upside down, up, down, and you can almost feel the ratchets letting you go at the top of the hill at times

Mum today, is going for her blood test, prior to chemo tomorrow. Of course if she shows signs of any infection she wont be able to have the chemo.

So this is the second cycle, Im really hoping that this time wont be as bad.