Getting Used To The Most Unusual Things

Hello Birdies,

I hope the weekend treated you well.

I've been back in the UK about two weeks now and it just occurred to me how quickly we can become used to something that you previously thought would be so unbearable.

I am used to not hearing my mother talk.

I am used to feeding my mother.

I am used to my mother holding a golf ball in each hand to grip when the tremors from her steroids get too much.

I am used to brushing my mother's teeth and combing her hair.

I am used to seeing a scar the stretches from ear to ear across my mother's scalp where the surgeon removed part of her brain tumor.

I don't want to be used to this, I don't want this to be the way things are, but it is and I am used to it. This makes the isolation so much worse. You can try to explain to people how you feel, what is going on at home, how you sleep at night, but it often seems so impossible for anyone to really "get it" you give up.

It is a hard feeling to beat. The question rings in your conscious, "why attempt to explain the inexplicable?"

Fuck Cancer Friday

Morning Birdies!

Don't forget to join in on #FuckCancerFriday on Twitter or Instagram and write what it means to you!

Well, coming back and forth to the UK is certainly not helping me to get use to this cold, it's as though my body is constantly stuck in LA temperatures; but dealing with the cold really is the least of my problems!

I thought, today,  I'd give you an insight into my daily routine with my mum and it will show the difference only 6 weeks have made since I returned to the US last.

8am-Wake up. Go downstairs to wake mum up, open the blinds, show her the world outside, see if I can get a "good morning darling" out of her. See how she slept. Make sure her arms are above the duvet-which, with my mum's condition, patients can forget about their arms if they are not in sight.

I always make us both a cup or tea of coffee and turn on the tv so we can watch the news. My mum can no longer feed herself, so I wait until the tea is cool enough to give to her and at the same time discuss what's on the news.

9am (ish)-Carers usually come around this time to give her breakfast and change and wash her. This is my time to have a shower and get ready myself.

9.30am (ish) From now until lunch time which is usually around 12.30pm I do mum's hair, brush her teeth, clean and moisturize her hands and feet. I give her a mid morning coffee and treat and the rest of the time is spent doing laundry, dishes, cleaning and most importantly being with mum and talking to her, keeping her as entertained as much as possible!

12:30 (ish) Lunch, I make mine and when the carers have gone we usually watch a Come Dine With Me re-run-mum and I LOVE that show. I comment on the contestants and mum laughs. I will go out to get shopping and figure out mum's lunches and dinners for the next few days-and I like to get a treat for mum every day.

3pm Aunt H, comes over for a cup of tea and to see mum and catch up. We usually tell funny family stories and Aunt H, tells us her news and checks up on mum. From this time until the carers come for dinner we may have M pop in from next door.

4.30-5pm (ish) Carers come to change mum, make her comfortable, give her dinner. When they leave I make my dinner and mum and I always watch Come Dine With Me and Dinner Date-I love these shows-great fodder for commentary and mum laughs at it all.

From now until the carers come for bed, I might read to mum, we watch tv and I just try to talk to mum as much as possible and interact with her and it's all about getting her to react and engage.

Mum's bed is in the living room facing the tv, so obviously mum watches a lot of tv, but when people come in I always turn it off otherwise she won't engage and certainly won't be able to concentrate. Also, I like to read to mum to give her a change of pace and something new. 

For me it's all about making the day as different and as entertaining as possible.

I like having the evening with mum, it's just us, usually no visitors and we watch the soaps and I pull up a chair next to her bed, hold her hand and talk about the rubbish we watch on tv.

8.30-9pm Carers come to get mum ready for bed. Sometimes they come early, so I get in my pjs too and sit with mum until she falls asleep.

**And don't forget, I have left out the constant care of mum's needy but wonderful kitties as well as all the others in the neighborhood who love to come and visit.

10pm-Sleep and repeat...told you I had a glam life... ; )

High 5-ing A Cat...Don't Be Jealous Of My Awesome Saturday Night

Because I love you all, this video is for you...

Being Back In The UK...

'Ello Birdies!

So, obviously, I'm back in the UK. The flight was gross and uncomfortable and there wasn't enough whiskey to raise my spirits (pun intended).

I knew it was going to be different coming into the house. The sofa would be gone-that sofa that used to be in our old house that all my friends slept on when they'd had too much to drink and didn't want to go home. 

In place of the sofa was a hospital bed that emitted the occasional mechanical sighs as it pushed air through the mattress to move it to prevent bed sores on my mum. 

And my mum, my dear mum. 

As I came through the door, terrified at what may greet me, and even more terrified that I may not be able to hide my fears-M from next door was feeding my mum a cup of tea. That image was enough to bring me to tears, instead, M made a quick exit and mum managed to say "hi baby!"

It was so good to see mum, I was exhausted from the flight and my aunt went over a little about medication, how to raise the bed etc. I grabbed a chair, sat next to mum and held her hand and just talked. I spoke to her about nothing and everything until she was tired and I went to bed. 

I passed out and woke at 4am due to insane jetlag...I wasn't sure whether I was here or there, which continent, which cat I could expect to jump on my bed and what was to come; but I was with mum-that's all that matters.

While Back In Los Angeles...

Well, I'm doing a pretty shitty, slow, job at updating you, aren't I?! It ends here, I promise-I will be better!

Anyway, back in the US, my best friend, A, picked me up from the airport and knew me so well, that we just caught up on her wedding plans. I think I have mentioned this before, but, she is getting married in April, and due to everything that has happened since Mum has become ill, I can no longer be her bridesmaid, attend the wedding shower, bachelorette weekend and perhaps not even the wedding.  To be honest, I know very little about all these obligatory wedding events that lead up to a wedding and cost everyone hundreds of dollars, and don't really agree with-however; she is my best friend and has been there for me through thick and thin and it's a shame I can't be there with her.

Anyway, we drove back into LA chit chatting and it felt so strange seeing the plam trees, feeling the warmth of the evening. I picked up my car which I had parked at W's (a great friend that I used to nanny for) drove home and was greated by this baby....

I jumped into bed and cuddled with my Johnny Cat-and admittedly wasn't looking forward to waking up.

As the weeks went on, I was very aware that my return date was looming. I spoke with my aunt every other day and the news wasn't great. Mum now was in a hospital bed in the living room. She was finding harder to move her limbs and to get up. My aunt had to organize to have a hospital bed delivered and one of the sofas removed in the living room to make room for it.

Mum's consultant upped her steroids again which showed some improvement with her.

She can no longer stand, walk, lift her legs or arms too well and can most times, not take instruction.

She does not respond to you for the majority of the time, but does talk occasionally-usually, monosyllabic answers. It all just seemed to happen at once, far too quickly, and all resoundingly unfair.

Every day, back in the US, I was having a hard time, dreading seeing msgs on my phone, not wanting to wake up-and not wanting to see anyone.  I just wanted to work, come home and be alone.

I was determined to work as much as I could and I booked a couple of days on Glee, a movie in Palm Springs, and a webisode where I played a hippie...don't I look the part??!

It was all great escapism-maybe that's why I love acting so much-because I am able to escape from the reality. While back in LA, I wanted to escape as much as possible. I worked as much as possible as I had a lot of bills to pay, rent for the month I was going to be coming back...it was stressful to say the least.

I felt so deprived of having fun and acting my age while back in England, my friend T and I had some fun nights indeed while I in LA-but really, every act was merely a distraction from what was going on. 

And, before I knew it-it was time to head back to LAX...

Time For Us To Catch Up-Part Two

Ok...where was I? Oh, yeah, waking up...

It was hard to believe after a couple of months I was going back to Sunny LA, to  the life I missed so much, my friends, my social life-but it was all only temporary-I had a return date for 6 weeks.

I desperately needed to get back, not just to deal with all my financial issues, start to earn some money but to revive myself.

The last couple of weeks had been so, so tough-there was a decline with mum and she was needing more and more help. I was emotionally and physically exhausted-I needed my friends, some normality and a break.

My taxi was coming early, I woke up exhausted but determined to not think too much and just go step by step. Of course it was pouring with rain outside, I went into mum's room and kissed her and told her I loved her and I was leaving now. Luckily (only in this case) her emotions were not as they were. She seemed not to have all emotions register quite fully, so as I kissed her goodbye she didn't cry or look upset but said goodbye and that she loved me. I managed to keep it together as I locked up and stood outside in the rain waiting for the cab...which was 25 minutes late...  Needless to say, this gave me plenty of time to imagine all the things I may have forgotten to do for mum, or things I should have said. 

However, when the cab finally arrived, I was soaked through and kept saying to myself, "just get through the flight. You can break down when you're across the Atlantic." 

Time For Us To Catch Up-Part One

It's hard to know where to start to fill you in on what's happened, but the beginning would probably be a good idea.

I've been absent from these pages for around 6 weeks now. A couple of days after my last post my uncle suggested booking a ticket back to LA with the return date coinciding with a meeting with the consultant to examine the results of her scan after radiotherapy. My uncle and I went into Manchester, booked the ticket and within 2 days I was on a plane back to the US.

Leaving mum had one blessing, and that was that her emotions and reactions had become so stunted that she didn't cry or show any sadness at me leaving. Her state upon leaving had declined somewhat-which we all thought was due to the after effects of radiation. Mum was having weakness in her legs and was finding it harder to get downstairs, some days she was talking less, but still my mum; and hopefully coming through the back end of the radiotherapy.

I prepared to leave with everything in place I could. I went grocery shopping and packed the fridge, freezer and cupboards with all mum's favorites. We had carers in place four times a day-becaus carers were coming in to prepare food for mum unfortunately, it all had to be microwaveable (except breakfast). I hated this idea-but I understand, carers have limited time and it needs to be ready to go.

I wrote out menu's for the next couple of weeks, I left printed out instructions for morning, lunch, dinner and bed. A sheet just about mum, her weak side, what she likes and doesn't like etc. The district nurse, social workers, carers etc. had all this info, medicine etc. but, I wanted to remind anyone new. 

Example of my Post-It note labeling frenzy in the kitchen:

My aunt and the wonderful M & M (next door neighbors) as well as other neighbors would be popping in.

I tried to prepare myself to leave by keeping busy, making sure everything was as in place as possible (with the obvious HUGE help of my aunt-who was the one with the major responsibility)

While packing and digging out my passport and green card that were dusting up after my weeks back in the UK; I concentrated on getting back to LA and figuring out how I was going to pay all the bills stacked up, where I was going to get some work and how I was going to cope with the guilt. 

The night before I left, I stayed up as late as possible packing-hoping I'd be so tired when I woke to leave I wouldn't feel so torn.

When I woke, it was time to say goodbye...

TO BE CONTINUED...