Au revoir, until we meet again

Xmas day, 2007

This day is for the children, but I am allowed to feel sad or cry as I will be at the hospice.

This was Andrea’s last entry into the diary, so I don’t know what her thoughts were in the final few days, but I did spend the last evening with her on the 30^th December, where she finally got her haircut, and she looked so cute.

On New Year’s Eve, the Hospice called to say, Andrea had gone downhill and they had upped her painkillers and given her sedatives. I went over with Dad, but neither of us thought she would be gone by the end of the day, but it seems Andrea wanted to finish the year off tidily. 

At around ten to nine, Andrea came too briefly and the nurses came in and settled her, as they left the room, she took a breath in and didn’t exhale. Her hand was held tightly in mine.

  

The last three posts... no. 2

24^th December, 2007

OK, I am scared of dying. There, I’ve said it. There is no point putting on a brave face and pretending, but what I decide to do with this overriding emotion is up to me.

The last three posts... no. 1

20^th December, 2007

Very beautiful, thick frost last night. The view outside my window is beautiful. Attending the carol service this afternoon.

Andrea did make it to the Carol concert in the community hall at the Hopsice, though it was touch and go as she had breathless attack. Then she read a passage from the bible and got recorded onto local radio, me standing behind to take over if needs be. The audience were crying and I am not sure who they were crying for, but Andrea and I stayed dried eye.

I am completely on my own

19^th December, 2007

I don’t want to get too deep, but I can feel my body slowly being taken over and I need time to adjust to this. I am frightened about what will happen next, both my legs are swollen up very badly. Apprehensive about going home for Christmas as I don’t want to spoil it by being in pain, also the night times are when Jue worries so I may come back here to sleep.

Jue came in for a quick visit and she looks unwell and I am worried that her and John would prefer it if I was not with them for Christmas, due to the circumstances last year over Rick dying, the parallels are just very, very similar. I know it is not my fault, but I do feel responsible and want in someway to make to easier for them.

It seems from my perspective if you are married or have a partner then you will be looked after when you are sick (if they stay around) RP didn’t. I am aware I need a lot of medical intervention, so this does make all of us more apprehensive. I could be picked up on the 24^th and 25^th and come back here to sleep or stay here over Christmas. I am not as sad as I thought I’d be. Deep down I knew that particularly at Christmas, Jue and John want things as normal as possible. RP left me last year and now my family want to do their own thing and my feelings and situation appear to count for nothing. The nurses, in particular, Kate and Anne, both reminded me at this stage in my life I should be thinking of my feelings for once and not taking everyone else’s on board. I remember saying when I first arrived, I felt abandoned and then be made to feel this was the worst thing I could have said BUT actually it was fairly accurate. Three months ago I was working, had my own flat and now I don’t feel I have anything. My home is at the moment a room in St John’s hospice. I get the feeling I really am doing this completely on my own.

I wish he was there for me

17^th December, 2007

I am so low. Both my legs are swollen and I am finding everything that bit harder, and I am frightened. I want to ring someone but I don’t know who. These are the times when I wish RP would be there for me on the end of a phone.

Acceptance

14^th December, 2007

Marion is coming in this morning to help me wash etc. She wants to take me out for lunch at the pub on the corner. The village of Moggerhanger is so pretty, I would love to be able to just get up and go for a stroll. I am a little apprehensive about going out.

I felt good in the open air, but in the pub I had a hot flush and began to feel light headed. It wasn’t that bad as I did manage to finish my pudding – Treacle sponge and custard. On the way back in the chair I felt desperately unwell and just wanted to lie down and go to sleep.

I find myself thinking today about the acceptance of the fact I am dying. Everything seems to be slowing right down. The hair on my legs has very little growth and I have not had a period for several months. I am constantly tired and could sleep all day. I realise I have don’t have much longer and this is not meant to sound pessimistic, as I am not going to give in without a fight.

Whilst writing this, Tony, Heather’s boyfriend came wanting to read some poetry and then he read me some more of my book. I’ve never spoken much to Tony before, but ironically out of all of my friends he seems be much more aware that I need a lot of rest and doesn’t expect conversation.

11^th December, 2007

Strange day. Felt emotional, angry and very tired. Trying to still maintain the independence I have with washing and dressing, but I have to admit though I can do some of it, I get too tired. This gets me so upset and down as I so fiercely want to keep my independence, but I am just going to have to accept I am going to get less so as time goes by. I suppose I am trying to prove to myself when I stay at Jue’s over Christmas, that she won’t have an extra amount of work to do looking after me. It is moments like this that I need RP, he could help out and make life that bit easier for Jue.

with Daisy and Boo, December 2003

10^th December, 2007

Back at the Hopsice. Feel very lethargic and generally tired. Jue seemed angry with me on Sunday and I am worried she is finding it all too much, but it was more she was angry at this disease.* I wish we weren’t in this situation. Looking at it I am now on oxygen all the time and walk much slower, and suppose this does bring home even more the fact I am dying. I will return to this later as still very tired, so will love and leave you.

*I was angry because she wasn’t dead yet. 

Going home

8^th December, 2007

02:00 - Can’t sleep! Looking forward to spending the weekend with Jue! This may sound odd, but at times I have to remind myself I am in the final stages of cancer and that I am dying. When my breathing and pain is under control, I feel quite strong in myself and can almost convince myself I will get better!

In 1985...

... when bread cost 31p and an average house cost £30,000, she was crowned Ampthill Festival Queen. The local paper came round to take photos. They had her sitting on our lawn under the old yew tree, the sun playing with her blond curls. I stood in the shadows, my hands over my belly and bit my lip.

She made the front page – Festival beauty with brains. It made her out to be some super academic and my eyes stung as I read it. If I couldn’t have the beauty at least I had the brains.

She attended wine tastings and dances; she walked down catwalks in Woburn Abbey. I trailed after her, grabbing for the reflected glory that flashed through my fingers.

After all, wasn’t this the way it would always be? She had an adopted child across the Atlantic named after her. She had a boyfriend with a car and stubble. She had blond hair, blue eyes and long limbs. She was always going to be two years and three weeks better than me.

When she came home from the hospice – we got out all of her scrapbooks. She had kept the red sash and the cheap tiara that I had secretly danced around my bedroom in. She had kept the newspaper clippings; the programme of events, and in a small square box wrapped in tissue paper was the icing shoe on top of her celebration cake – a wedding cake for beauty.

I was there the night she won. She whispered I should enter too as the compere winked at her. Instead, I sat against the wall and watched her crowning, scuffing my shoes along the squeaky floor of the Rugby club bar.

“Maybe you can enter next year,” she said, when we got home and she twirled around my room, all bouncing hair and white teeth.

“Nah! It’s not my kind of thing,” I lied, wishing she would go to bed so I could get lost in the Stephen King book the librarian had given me from the drawer in her desk.        

“Oh Juey, you’re beautiful too, you know that,” she cooed, and I could hear the caveat echo between us – for a short arse.

Arrgh!

7^th December, 2007

Damn, Damn, Damn! I was incontinent last night, the only good thing was the super tena lady pad, which Dad bought (in bulk!) did keep it all in. I am so annoyed with my body, just when I think everything is settling down for a little while.

but not today

6^th December, 2007

Felt a lot more positive today. I know that at least I belong somewhere, although I wish it wasn’t here, it is somewhere I feel cared for and safe. For the first time today, I really looked at myself in the mirror. I MUST not lose sight of my identity – by that I mean, I have always tried to dress and smell good and at Christmas I am going to buy myself a new dress or outfit, try and get my hair done, so I feel a bit more like me.

I am dying

5^th December, 2007

Hard day today. Felt tired and generally shaky. This might have something to do with the fact that I know Juliet was going to be talking to the consultant and making some decisions about my care. Despite my hardest efforts, I cannot be as independent as I so want to be. Juliet and I both know this, so going back to live with her is not really an option. Staying for weekends and the odd day is fine, it’s just longer term would be difficult to manage. I need oxygen, syringe driver and help with washing, bladder problems – incontinent at night – and I need to walk with crutches. 

I am to stay here at St John’s, which takes away the worry of who will look after me, but it does feel very odd as if my life has been taken out from beneath me and I am left dangling.

Having had time on my own thinking about it and talking to Heather (who has just left) has made it much clearer in my head – there really was no other alternative. Jue has found the name of a nursing home in Marston Moretaine, I am a little sceptical, but if it is somewhere we decide to go then so be it.

The one thing I have keep to reminding myself is that I am dying, and no one knows its next course of damage/deterioration so there really is no point in planning too far in advance. I have to keep looking for realistic short term goals. This first is going to Jue’s for the night this weekend and then after that it is Christmas, after that we have deliberately left it open. Seeing Heather tonight has really lifted my mood and put it in perspective. Staying here is absolutely the right thing to do – Please let Heather know this!

JUE POST 8

She played the piano with long slender fingers and made audiences weep. I sprained my foot on the pedal, trying to perfect the theme tune to ‘Terms of Endearment’. As I lay on the settee, red, sweaty and in excruciating pain, she made a cold compress with frozen broad beans and found me a walking stick, with a solid silver top. Our parents laughed and thanked god for an end to the torment.

Getting so tired

Canada, July 2005

4^th December, 2007

Not felt good today. SOB, anxious, generally on edge. ND spent the day with me, which helped, she does have a calming influence on me and I do so wish we lived nearer one another. She is having a shit time at the moment and although I am ill, I would just love to be able to be around for her more.

I must write more of my book tonight as Jue is expecting 1000 words by tomorrow*. This is quite useful giving me a goal as I will hopefully reach it and I am so desperate to keep positive, I don’t want to get dragged into a deep hole of depression.

I supposes I am going to have up and down days; this is just a down one. When I feel like this I sometimes wish it was all over, I am just so tired.

* She didn't manage this, but it did give her something to plan for.

It is not my fault

3^rd December, 2007

It is not my FAULT I have cancer; this is something I need to keep reminding myself of, as I am beginning to feel very isolated and abandoned. I feel stronger in myself and able to do more, but I do need to recognise my limitations. After my bath I asked if I could be more independent, so I did dress myself completely, using the grab stick to get down to my feet. At times I got a bit SOB, but I kept this under control with deep breathing. It took me a long time, but at least I did it on my own. I am determined not give in and whilst I am not in denial that I have a very poor prognosis, I don’t see why I can’t do some things on my own.

I am concerned that Jue, all of them in fact, are perhaps wishing they hadn’t agreed to have me in their house. It is a huge emotional undertaking that we were not prepared for, added to the anxieties we each carry around, my anxieties stem from being out of control and the pain relief not working. Jue I think is concerned that she will be forced to care for me, which would cause her to resent me.* For me this week is all about taking back some control over what happens to me. I have asked to attend a meeting with Jue and PM (the consultant). I am hoping firstly they will keep me up to date with their thoughts and about my prognosis and disease; secondly and perhaps more importantly from my perspective, I want to show them I do care about Jue’s family life, and their family dynamics. All my belongings are in that room, which was overhauled for me and the new shower room that was built, so there is obviously a huge part of me that wants to come home, but I am frightened if I say I want to be with all my belongings they will pressurise Juliet.

I think tomorrow before the meeting with PM, we both need to put our cards on the table and be brutally honest about what we want. There is one big problem for me, all my personal belongings will be at Jue’s and if it is decided that I don’t live there some of the time, I really don’t want my possessions used. I know that sounds churlish, sorry for that, but I wasn’t exactly given any option. Vans and men were taken to my flat and they took everything over to make that wonderful room. In light of the fact I am dying this should not be top of my list of priorities, but it is more what it represents, I suppose, in that my whole life is turned upside down and I have no real space of my own.  Jue and John get a new shower room and sun room (furniture when I die)** and I am left to deal with dying from cancer, watching parts of my body deteriorate, whilst everyone around me finds it too hard emotionally to help.

ALL I want is someone to take me in their arms and tell me it will be all right, but the only person who could do that is RP and he walked out on me in March 06.

*Did I make it that obvious. This entry makes me feel terrible because I clearly was too selfish to keep my fears and worries from Andrea (as if she didn’t have enough to contend with).

** And yes, of course the reality is we did.

JUE POST 7

In America with Dave, 1979

A Silver Jubilee, a Royal wedding, a bigger house in a better part of town; street parties and bonfires and sticklebacks and dens and rollerskates and rabbits (called, Flopsy, Mopsy and Thumper) and knock up ginger and daddy long legs, and Lisa; our counterpoint, hanging between us tough and brown, bridging the gap of two years and three weeks.

I wrote my very first book about war evacuees in a lined notepad – filling fifteen pages. I tumbled down the stairs to bask in the praise of Dave and Vickie, American and loud, childless and besotted by Andrea’s white blond tresses.

Across the Atlantic, she and I and shiny new passports, black and hard, and air-hostesses with red lips, and a Captain who made my heart tumble, and wings on a golden badge, pinned to my t-shirt. Andrea held me tight in a Pennsylvanian thunderstorm, in darkness so black I swallowed it, whispered soothing sounds into my sweaty head. I smelt our mother on her skin. 

In America, with Dave and Vickie, 1979

Lakes and water snakes and wooden rollercoasters as high as the clouds, dirty feet and go-karts and sloppy joes and silver dollar pancakes with maple syrup dribbles on my sun-top of yellow skies, which lay flat against my chest; breast buds pushed out her t-shirt.

On the plane home, she stabbed me in the thigh with the Statue of Liberty. I cradled it in my lap all the way across the Atlantic, where at 32,000 feet, I became nine. The Captain took off his shiny peaked hat and kissed my cheek and I got dizzy.

Our Stateside mom and dad, spoilt by her dimples, named their adoptive daughter after her.

I was always two years and three weeks too late, but not anymore. In just less than a month, we will be the same age.

nurses

2^nd December, 2007

Just had a bath – the great majority of the nurses here are very, very good, but the two who have just bathed me were a bit slapdash, making me feel very rushed. I am beginning to get used my disabilities with my leg etc and subsequently feel able to do more for myself, which will be much better for me in the periods when I am home with Jue, but I do need to take it slowly as I get SOB easily.

pissed off!

1^st December, 2007

I cannot believe it is DECEMBER! Where has the time gone? Feeling pissed off today, I wish that I could just go out as normal. I am gaining more confidence in being able to do things for myself, like washing etc. This bloody cancer is just ambling along as it has been for years, which does make me wonder if I have several months of this, so I may as well get used to it. I think when I know what the plan is regarding shared care between here and Juliet’s, it will give me a sense of belonging – in particular, as my stuff is all at Jue’s, and I love that room! I also need to think of a project to do, like work with cancer and dying etc that could be used in teaching at the Uni maybe – after I have done the photo album for Dad of course.

It is so hard adjusting to life where I hardly go outside, due to a lack of mobility and need for oxygen, but also I have lost all my confidence and this is something I need to work on as I do want to be able to live a little. I do seem to be a lot more with it, but I am not sure if that is because I am here at the hospice where I know there are people all around, whatever it is, I am feeling a whole lot better.

17:00 – It happened again, I became very short of breath and needed to open my bowels urgently. Thankfully the commode was near by and I recognised I was anxious and managed to do a large poo! (sorry) whilst doing breathing exercises through my O2. I have a feeling this has something to do with an autonomic spinal reflex and the spinal secondaries are causing a response. I also get a searing headache at the same time. I just need to make sure that I open my bowels regularly and keep the commode near me. Now I know there is a link between the SOB and bowels it makes sense and has reassured me it was not my lungs that are causing the problem, although I do still need the oxygen as I get short of breath on exertion. I am frightened I will suffocate without the oxygen, which is a huge overreaction, but I just can’t help myself.

22:00 – I am all padded up and ready to go. Dreading going to sleep again due to being incontinent. It just feels so degrading, and I also don’t want my skin to breakdown and become sore. I’ve been started on a new drug, which is supposed to help, but I am not sure how long it takes, I had the first does yesterday, with no joy. I am able to control it in the daytime, but may have to wear a catheter in the future, if I lose complete control.

I never did go back to the Royal Marsden, maybe I should write a let them know what happened. I don’t think they would have been able to do a better job at this stage of the disease, anyway.

Euthanasia?

30^th November, 2007

Frightened today. The spinal secondaries are affecting my bladder and I have no real control, apart from in the daytime. I am today thinking what will be affected next. I am so frightened I won’t be able to walk and become more and more dependent. SL came to visit, I love seeing her, but she did make me feel sad as she was talking about getting a dress and shoes for a party and I felt so envious, and yearned to be able to do this myself instead of just lying here. BUT i’m not, so there’s no point feeling sorry for myself.

I heard such an anguished cry of pain from the room next door, well I hope it was only next door as it was so loud. I just hope he didn’t die in too much pain and it was just a cry of goodbye. I’m beginning to get more frightened of the time that I die, maybe because of the incontinence of because I have more time to think about it being in the hospice. In particular I am sleeping less in the day as I seem to be getting much better sleep at night, maybe because of the oxygen or all the combined treatments. I have been thinking a lot more also about euthanasia – I don’t/can’t watch bits of my body deteriorating, and to be completely dependent fills me with dread.

JUE POST 6

I still find out things about her that I never knew, even two years on. Inside her camera case, I found four heart shaped stones; she collected them, tucked them away for safe keeping. I didn’t realise how sentimental she was, how fiercely she loved.

He was a fool; I pity him.

We have six heart shaped stones now and still counting...

The true value

29^th November, 2007

Feeling a lot more positive today. Getting a bit down about the fact I am not in control of my bladder at night. The pad I wear does seem to catch it all, but I need to remember not to drink too much in the evening. This was one of the things I was dreading happening and may mean I have to have a catheter soon, just one more thing to hang of me with the O2 and syringe driver!

SS came in and Jue and I had a sound healing session. I felt so close to Juliet and incredibly happy deep in my heart, whilst in the session. I was remembering walking in the woods behind Holly Cottage and smelling the leaves with Jue and Emma (the Alsatian dog we had for a year). I do truly believe that using the alternate therapies helps me to relax and work through my anxiety. I do find it hard to accept that I am not in complete control, and I probably won’t ever be again. I am afraid of dying, though not sure ‘afraid’ is the right word. I am beginning to realise the true value of everything around me and the people in my life, and I don’t want to leave them. But I have to do this bit on my own. I do hope I am able to see RP’s Dad, but at the moment, I feel I am not ready to die, but then this in itself makes me feel like a burden! (I get so angry with myself for feeling like this, I just can’t seem to find the middle ground.)

Losing control

28^th November, 2007

I slept the whole night without waking up once. I am amazed! The only thing however was that I was incontinent of urine. I am beginning to lose control of my bladder function – yesterday evening whilst reading it happened as well. This makes me feel scared as the spinal secondaries are clearly causing motor function problems and it makes me wonder what other things will be affected – bowels and walking in particular. I can’t seem to win, sleep v incontinence. This makes me angry and frustrated.

13:20 – Dad just left. He came on his own, the first time he has driven this far alone, since diagnosed with Parkinson’s. I was expecting them both to come. He only stayed an hour, and it makes me feel as if I am a bit of an inconvenience. I know that is not true, but I do feel so lonely at times and we all have our own ways of dealing with grief and the fact I will die soon. On asking Dad if Mum is OK, he tells me Mum is afraid of driving here in case she gets lost. She has a real fear of getting confused, but I am more upset than I thought I would be. I think this is compounded with the fact the Doctors, this morning, were talking about the possibilities of where I go after here*. I have a weekend visit arranged, but I can’t stay here long term and this also goes for staying at Jue’s. The doctor asked me if it would be possible to stay at Mum and Dad’s but it would not be possible ever! It makes me sad that my parents don’t want me, even when I am dying. That does sound a bit melodramatic, but that is the reality. So I need to look at my options, nursing home/ nursing care and get a care package that I can afford, although there is no point in looking too far ahead.

22:00 – Had a real rollercoaster of emotions. Spoke to the Social Worker and told her we need to look at sorting out nursing care 24/7, but because we don’t have a spare bedroom for them to stay in and have their own space, this is not a viable option. I was left feeling very low, together with how I felt about Mum and Dad. RP rang, which left me sobbing and I just wanted him to sort it out with Jue – I am trying to deal with the changes that are happening, as I do now seem to have no control over my bladder when I sleep. I am shattered and spoke to Jue, RP the nurses and social worker. Where do people my age go if they need complex, longish term nursing/medical care.

The Consultant came to see me and has said that in my circumstances shared respite care between here and home will be possible, so after of hours of thinking what I am going to do and where will I be cared for it now seems possible to spend time in both places.

*I do think this could have been handled better at the hospice. I was struggling to cope with the thought of Andrea coming home and we had also agreed (Andy and I), that she would not die in my home, yet I felt under immense pressure to have her back full time. The average hospice stay is two weeks, and both of us were aware of this deadline. Lack of communication between the hospice staff (doctors, social workers and nurses) meant Andrea was never sure what had been agreed – this is something they need to improve; only one staff member should discuss discharge arrangements, imagine how upset and frightened Andrea became, being told by one staff member she could go home and return to her room, and by another that would not be possible etc. I felt terribly guilty for not wanting her to come home again, but she needed so much care physical and emotional and there is not enough help in the community to make this arrangement possible. Andrea needed someone with her 24/7 as she had frightening attacks where she couldn’t catch breath and was very unsteady on her feet. One thing she and I had discussed was the fact I didn’t want to become her nurse, but remain her sister, but this seemed an impossibility as the hospice assumed she would return to me, at least on a part time basis. 

JUE POST 5

1977. The longest, hottest summer in dusty, chalky Dunstable and a bedroom that looked over the Downs. I woke and jumped onto her bed to tell her how, in the night, I had flown around our bedroom and seen the top of the fairground teddies, shoved on top of the wardrobe, and skimmed the ceiling with my fingers. She, all blonde, blue-eyed beauty, whispered that she had also flown, and she could prove it; I didn’t ask her too. We shook our heads and giggled.

A shared dream or magic? We believed the latter.

We told our mother in breakfast chatter, my hair a nest of bracken, my legs swinging under the chair; her toes touching the floor.

She was long and lithe; I had to run to keep up when we climbed the chalk head (always playing catch-up). Stood at the top, arms wide, we whooped into the wind of possibility. She was always there, or was it me who never left her side? 

Mum, clearing out our room days later, found a smiley face drawn with black felt tip, on the back of the fairground panda’s head.

“When I flew,” she whispered to me, and then stood in the corner to do her punishment.

Where do I belong?

Christmas day, 2005 at Jue's house

27^th November, 2007

I MUST NOT LET THIS DISEASE TAKE THE ONE THING I DO HAVE LEFT – MY SPIRIT TO FIGHT!

Jue and I underestimated the amount of emotional and physical demands it would place on us if I lived in their house*. This does make me sad though as I really don’t have anywhere that I belong. This is primarily RP leaving me last year, meaning I had to live on my own, which just isn’t an option! Yet again I am reminded by elderly peoples comments at going into a nursing home and handing over their independence. I am going to stay positive. I have an idea of printing off some of my travel photos and framing them as presents for Christmas, and I still have all my letters to write, and I am determined to see out my life on my terms. I have to keep busy... when I am awake!

Today at St John’s, Dr Nyla has confirmed it is OK to stay here and go on weekend leave on the 8^th and 9^th December. This is good and both Jue and I are happy with this.** Initially we think going home every other weekend would be the best option so far, but we are going to see how things go as we are not sure what the cancer will do next – how and when it will finally win (I hate that word ‘win’ but that is how it feels).

I am beginning to feel a lot more anger and resentment towards RP (again) – how could he leave me in this situation. Though having said this, I don’t know whether I would want him to be my carer *** but it would make me feel like I belong somewhere.

Overall in myself, I feel better today. Got some things sorted in my head. Also friends from work are now coming to see me. SH and CH both came in, it was so nice to see them and to feel how much they cared. I do feel so lucky to have such wonderful friends!

*I must have told her I was struggling to cope, but I don’t remember doing it that early after her admission.

** I was dreading it.

*** He is a nurse.

dying, crying and custard

26^th November, 2007

Amazingly, slept really well, which maybe have been cause Heather came in and gave me a massage. Through this I have gained so much more from my friends. I enjoy Heather’s company so much and she gives a mean massage!

I think Jo is coming in this morning to help me wash and dress. She, like Heather, is someone I feel much closer to now and really enjoy talking too. Despite her own problems she is always very positive, and there are parts of her that I see in myself. There is no point feeling sorry for yourself, you have to keep going, the only other option is to give up, which I don’t think either Jo or I would do. Having just written that, lying here, I do sometimes get tired and feel like I wish it were all over. I see lots of people on TV and in articles and people generally making arrangements for Christmas, and I can’t do this anymore. I love arranging dinner parties and cooking and having people around for dinner, but I no longer have anywhere of my own to live. I think about Mum and Dad at home and Jue and John getting the dinner ready, putting on the telly, planning what to do, and this makes me feel so useless, and how the small details in every day life are so important.

Writing this makes me cry so much. I yearn for some normality back again, but for me normality is about getting used to how this disease affects me, and what I can do, because there are still things that are possible. I can still talk, make my own decisions (although at times hazy through drugs), laugh and cry. I have to overcome my fear of dying. I think because i have had cancer for so long, i convinced myself I had worked through all the stages, but I haven’t. I am very scared of leaving my family behind. I know they won’t forget me, but it feels so strange that they will exist without me in their lives. Of course they’ve got to carry on without me, which I think is probably harder. Looking at it like this makes me realise I am not on my own, we all have to deal with this.

Just had my supper and had a bowl of custard and a bowl of rice – delicious!! I have a strange craving for custard and tunnocks tea cakes!

I am more than this body

25^th November, 2007

Talked about my fears and how frightened I feel with lots of people today, which has helped. Talking to Jue was the best; we are very tuned into one another which is good in one way, but makes me feel sad at the thought of Mum and Dad and Jue without me when I die.

I am more frightened of the dying process than I thought I would be. I keep remembering people I have laid out, washed them and wrapped them in a sheet. Juliet asked if I would like her to do it for me. I hadn’t anticipated this, and whilst I wouldn’t mind, I suppose I would like her to remember me as I am now. However there is something quite comforting in knowing that she will have made sure I am respected and will have been with me right through until my body is cared for. I say ‘body’ quite deliberately as I am a true believer that ‘me’, who and what I am, is spiritual, and when I die it is this spirit that leaves the body, which is just a shell.

Abandoned

24^th November, 2007

Was readmitted back to St John’s Hopsice with acute SOB, which was probably a panic attack, BUT I was so absolutely terrified. I really could not get any air into my lungs at all. I didn’t lose consciousness, but I convinced myself this was it, this was how I was going to die. Only Ashley and Barney were in the ‘bar’, and they had to shout to Jue and John in the lounge. I really didn’t want them to see me like that, but I felt so out of control. My body seems to control my every thought and movement and I hate it. I felt abandoned but it was me who asked to come to St John’s. I hadn’t realised that Jue wanted to deal with this at home, which is why I asked for a 999 ambulance*. Throughout the night all I kept thinking was i am here and this where I will stay until I die. I feel it is coming closer, my every movement is slower and I am so very frightened and feel so alone.

Taking out my fears on Juliet was wrong, and accusing her of abandoning me was very low – but I suppose that comes from being let down by RP over the years, and it is not fair to compare Juliet to him. Ringing and apologising was the only way of putting it right, I just hope that Jue will understand.

Dying like this is like watching your life peel away. First my flat; independence; driving; working; dressing; make-up; feeling glamorous, until you are left with just you – your body and your thoughts. My thoughts right now are, I wish I knew how long I had left. For everyone watching this must be hard, they are losing me bit by bit.

*You can’t cancel a 999 ambulance, I know, I tried. Maybe I thought this was it, but Andrea was far from ready and wanted to go to hospital (to be cured, perhaps). After her emergency admission the previous week, I knew there was nothing they would or could do. The ambulance crew were incredibly sensitive and gave me time to ring the Hospice as Andrea was adamant she wanted to go somewhere. Luckily they had a bed.  Following the ambulance to St John’s I was struck with a huge sense of relief. She was someone else’s problem, and though I hadn’t fully realised it yet, I didn’t want her to come home again. In a sense she was right, I had abandoned her, but I convinced her otherwise. Bitch or desperate? You decide.