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.