JUE POST 4 - I feel guilty because...

Like New Year’s Day, once the party was over, it felt like an anticlimax. Isn’t she supposed to die now? I continued to muddle through, getting to work somehow, getting the shopping, holding it all together - but for how much longer. I became obsessive in my hunt for answers – when, when was she going to die? I can tell you all about the signs and symptoms of death - the pre-active and active phases – I checked her nail beds for signs of oxygen starvation. So desperate for it to come to an end I was almost pleased when Dad phoned to say she was severely short of breath and the District Nurse had called an ambulance. For all her brave talk she was no more ready to die than when she had been told of the terminal prognosis five years before.

I agreed to meet her at the hospital, didn’t even bother asking dad why he wouldn’t go with her– but asked him to be at mine when the kids got home.  Arriving before her, I made my way to the admissions unit. I heard her coming. Not that short of breath then. She was giving instructions to the ambulance guys to be more careful, to sort out the oxygen tubing etc.

You can’t take the nurse out of the patient.

She demanded a chest x-ray, convinced she had fluid in her lungs, convinced they could drain it and make her feel better. I see now what a desperate move that was, at the time all I could feel was anger that she had dragged me away from work once more, but was no nearer to dying. She was far too argumentative.

She sat on the hard trolley; I sat next to her on a slippy chair and marked A level essays, unable to talk to her, in case I revealed my fury.  And then the fucking syringe driver stopped working and she went into panic mode.

“Juey, it’s stopped flashing, oh shit, how long’s it not been working for?”

I stood up and took it into my hands.

 “Don’t touch it! You’ll make it worse!”

 “Maybe the batteries have come loose.” I shook it, pressed the button, nothing.

 “Get the nurse, hurry.” She pressed the call bell. “Leave it alone and get the nurse.” And then she started to

moan. I looked towards the nurses’ station, there was no one there.

 “It’ll be all right Pandy,” I said, and took hold of her hand.

 “Get the fucking nurse,” she replied through gritted teeth, and shoved my hand away.

The woman opposite began to climb out of bed, calling to someone, crying for something. I walked towards the nurses’ station and caught the eye of a doctor. “My sister, she needs help, her syringe driver’s not working.”

 “We’re extremely busy, someone will be with her shortly.”

“No, you don’t understand, she’s on huge doses of alfentinil, she’ll be in agony in minutes.”

“Your sister is not the only one that needs attention – ah, Kathy, this lady is concerned about her sisters syringe driver; what bay?”

“I don’t know. That one, there.” I point, I can see Andrea curled up in a ball, her hands grabbing the sheets.

The nurse nods. “I’ll be there as soon as I can.”

“No, you don’t understand, it has to be now, she’s dying, she has an extremely painful nerve cancer, she needs painkillers now!” I knew I was getting angry, but I couldn’t go back to her without help.

The nurse shook her head at me. “There’s no need to shout.

We returned to her bed and the nurse told her to quieten down. Andrea fixed her with her blue eyes. “Then get this thing working.”

The nurse fumbled with the machine “Might need a new battery.”

“Yes, have you got one?” I said.

“I’ll have to send a porter to the stores.”

Andrea began to weep.

“Can you give her shot of diamorphine in the meantime?”

“She’s not been seen by the doctor yet, it’s not written up and isn’t she in for shortness of breath – diamorphine is not a good idea.”

I knew this had been a fucking mistake – you don’t go to a hospital when you are dying, it is the last place you want to be. And then a Ward Sister walked over in a dark blue uniform and an expression that told me she understood. She called the doctor and asked me how much diamorphine.

“60-90mg.”

“You’re not serious?”

“That’s what she’s been having at home.”

She got 30mg. And then the porters came and wheeled her to X-ray and I followed, wondering why we were doing this.

Two hours later, battery changed, Andrea had fallen into a fretful sleep, twitching and moaning, saying things that made no sense, and finally the doctor returned. I could see in his face, he didn’t know what to say. I already knew the X-ray would show her R lung taken over by tumour (when she breathed in only the L side inflated) I hadn’t told her this.

He began to whisper.

“Wait,” I said, and turned to wake Andrea.

“There’s no need,” he mumbled.

“There’s every need,” I replied. I had no strength left to fight. I had fought for her for two months and it finally hit me that no one really knew what to do – we were all helpless in the face of death.

“Well?” she said, adjusting the Oxygen mask – her lips were dry, white crusts at the corners. “Is it a pleural effusion?” (fluid in the lung.)

The doctor sorted of nodded.

“Well you can drain it then,” she said, folding her arms. “Will you do it here, or admit me?”

The doctor’s mouth opened and then closed, his discomfort was palpable and I imagined the argument there must have been about who would get this task. He was a junior doctor. I felt sorry for the poor bastard; Andrea used to eat junior Doctors for lunch.

“I don’t think it’s drainable,” I said, trying to help him out.

“Of course it is.” She smiled at the doctor. “My sister used to be a nurse, but she’s forgotten a lot of it.”

I looked at him; willed him to tell her the truth so I could go back home and she could carry on with dying.

“It’s not that simple.” He looked anywhere but at her. “The fluid is in little pockets, sort of diffused."

“But you can drain some of it, can’t you...?” she persisted.

“I think what the doctor is saying is that it’s more tumour than fluid,” I said.

He nodded fast. “Yes, it’s just not going to make any difference – I’ve contacted the Macmillan team, someone should be down to sort out some oxygen for home.”

“But I know it’s an effusion,” she said into the air, defeat deflating her.

“I’m sorry,” he said and then vanished, leaving me to pick up the pieces. But I had no energy to talk, nothing to say that would make a blind bit of difference. I sank into the chair and continued to mark the essays. She lay staring at the ceiling.

Tea time came and they brought her a tray of food. I sat and watched her eat, thinking about the kids at home, waiting for their dinner. No one offered me anything.

Finally, after dark, the MacMillan nurse arrived with forms to fill in for the delivery of oxygen. She made some calls, promised it would be there when we get home. She didn’t have much else to say either – no one did. I was desperate to get out of there. I wanted home; I wanted John, a drink, a fag. I didn’t want to think.

"Right let’s get you home,” I said as cheerily as possible.

“We have to wait to be discharged by the doctor."

I looked around; the admissions unit was packed.“Why?”

She didn’t have an answer, but then I realised we were trapped anyway. She couldn’t walk and we had no wheelchair. I saw a porter and I got up and ran to him.

“I need a wheelchair to get my sister home.”

"Don’t worry, I’ll sort it,” he said, and disappeared into a side room and backed out moments later with a wheelchair. He helped me to get Andrea into it.

"But I need to be discharged,” she said.

"I’ve done that,” I lied.

He wheeled her outside and I retrieved the car. He helped her in, she was breathing heavily. Rush hour traffic streamed in lights past the hospital – it was dark and foggy and I was so, so tired.

We drove in silence, nose to tail for 12 miles, and then out of nowhere I caught a glimpse of blond in the headlight and then bam, something shuddered into car. I kept hold of the steering wheel and carried on, sparks flying out in front, until I found a safe place to pull over.

“What’s happened,” Andrea said, “what have we hit?”

I got out and saw blood across the bonnet, the wheel arch pushed into the tyre, the number plate touching the ground. I bent into the lights and saw hair stuck to the grill – coarse hair, not human.

I got back in, my hands shaking. “I think it was a deer*.”

Andrea soothed me, told me I did brilliantly and she reminded me of my big sister, the one that wasn’t dying.

*It was a deer; a Muntjack. They are a nuisance around here. Initially bred on the Woburn estate, they escaped into the wild – the size of a Labrador. The next day, I saw it, legs akimbo, by the side of the road.  It cost £1000 to fix the damage; I lost five years no claims bonus, and the most galling part, we should never have gone to the hospital in the first place. 

My guide

Taken by Pandy in July 2007

20^th November, 2007

Did not manage to finish the above, fell asleep! The words SS has written are so heartfelt. I truly believe the reason I met her, was so she could be here to guide me through this part of my life, but maybe she is at a time in her life where she needs my guidance too?

I did not go to the graduation ceremony.  I am getting so tired and breathless doing only small things, which I think is a combination of disease and anxiety. I did think long and hard about it, and I am so grateful to C for organising it, but the feeling of safety I get from being here with my family is very important to me. I must try to go out a bit more.

I haven’t written about my party yet, and now I have the photos I can see it wasn’t sad at all. People are smiling and enjoying it. I am not sure what I expected, but it was great to see all my friends in the same place. I did feel a bit guilty that I had invited all of my work colleagues, but at the time we had arranged a lunch at Brockett Hall, which I then cancelled, so I think that is why it hadn’t crossed my mind. Marion was not there unfortunately, but I know she will be having a great time in India. I am really looking forward to seeing her at the end of the week.

I wanted everyone to know each other before I died, so that they may even become friends and can support one another. The saddest part of the party was when everyone had to leave. It was like saying a final goodbye. It was very surreal feeling holding everyone and saying ‘goodbye’.

I need to start thinking about my Celebration of Life, NOT funeral and write it down so that everyone (in particular Jue) are not left with too much to think about. I can see she is getting tired with all the people/ carers coming in, and the hassle and the sheer amount of organisation that I need. I love her so much for everything she is doing. I am not able to do anything to help as I create the work!

I am getting more and more tired and SOB when I do things and at times I feel just left*, I suppose I am dying and the it is just a case of making me comfortable. The syringe driver does seem to be working fairly well, I only need to take one or doses of Oxynorm for breakthrough pain a day. I am frightened of new symptoms, what will I do if I need oxygen all the time? I sometimes feel alone, but then I am not sure who I could talk to, to make me feel better. I wonder what it will be like without me here. I want to be remembered, but not as some amazing person because I am not, but on the otherhand, I hope that people don’t remember me in too bad a light!! It is such a strange feeling writing about not being here. Everyone dies, life goes on, that’s how it is, but I really hope I will be able to look down on my friends and family and help. In particular Juliet and her writing, which I hope will be the one thing that lifts Mum and Dad and her when I have died. She has already been 1 of 25 finalist in the Commonwealth Competition, she deserves it, she works so hard and has such belief in what she is doing.

I’m tired now, it’s 21:00. I’m going to have a wash and a cup of tea. I take forever anyway, so by the time I get into bed it will be gone 22:00. Everything is becoming hard work, even the smallest things. RIGHT! That’s enough moping, off to the bathroom and another day!

*I think Andrea is referring to the Doctors and nurses, as she felt they weren’t taking her shortness of breath seriously enough. 

JUE POST 3

The snow fell. Soft and white it blanketed the garden. We stepped out with virgin prints, her crutches left damp black holes.  Bangs and sizzles, filtered through flakes as large as doilies. Back bent, she lifted her twisted face and smiled. I hugged my son close to my side – tried not to look – the flakes tickled my eyes, made them damp. I mustn’t cry, I cannot cry.

By morning it was if the snow had never been here. The spent firework box remained on the lawn until spring.

Party!!

18^th November, 2007

The day of my party! I’m feeling very anxious about it and I don’t know why. I’ve never felt this way before, but then I’ve never been dying before!!! I don’t want to spoil it for everyone. Heather has done all the organising; she has been marvellous.

Had a really crap night sleep and it is now 13:30, just had some lunch and feeling much better. I think I will leave my hairwash until tomorrow because on Tuesday it is my graduation, so it is going to be a busy week and I must get as much sleep as possible. It has always been my ambition to receive a degree! (that sounds so big headed and it is not meant to!)

My writing is awful, it’s because I am still tired. I hate days like this as they make me panic I won’t get all my letters written, in particular to mum and dad, Jue and John. I’ll stop here for now, have a wash and get myself ready for this evening!

23:00 – Nikki is just getting ready for bed. Tired, it was an emotional party, but really glad my friends got to meet one another. Manage to stand out in the SNOW and watch the fireworks, but it has made me realise how fragile I am. I feel absolutely terrified of not being in my safe place, namely Jue’s house or the hospice. I seem to have lost all my courage and keep taking Lorazepam, which then just makes me feel like a failure – ARRGGH!

Very sad saying goodbye to people, but I hope we will all be able to meet up again before I die. SS wrote me the most beautiful card...

Andy and Ashley in Rome, April 2006

16^th November, 2007

07:00 – Ashley just came in (ready to go on her paper round), when she saw I was awake she came and gave me a kiss and a cuddle. THIS is what living is all about, the sheer joy of having people who care about you!!

The Marie Curie nurse was great last night and makes a fab cup of tea.

Yesterday afternoon, RP took me over to his new house. It’s great and will suit him down to the ground for now – ON HIS OWN (for now). His relationship seems very odd, she is jealous of me. She really has no need, but I suppose I can see why, but once again if he had been honest with her at the outset as to why he left me, she would be more understanding now.

When I came back to Jue and John’s and my room I felt really safe here. I grown attached to the sense of security and love, but also the privacy they all give me. SO here is a message to Jue, John, Ashley and Barney:

I LOVE YOU AND THANKYOU FROM THE BOTTOM OF MY HEART FOR LETTING ME STAY.

p.s. Ashley thank you for the loan of your fan and the glasses of milk.

p.p.s. Barney, thank you for all your kisses and hugs and reading your stories to me.

Feeling bright at the moment; slept really well, but did sleep most of the day. Will do the same on Sunday for my party, so I am nice and refreshed.

JUE POST 2

Just this here now…

… became our mantra in the dying days. I stole it from her friend, who believes the road to God lies in meditation and world music. When Pandy returned to the hospice, I would sign off my texts with it and she would return it. I wrote a short story using the mantra and read it to her on a bright November morning, when she was still in our summer room that will always be Andrea’s room; sat on her bed that I said I wouldn’t keep but kept anyway – it was there, but I didn’t plan it that way, or did I?  A freshly decorated summer room and a new downstairs bathroom, in exchange for caring for my dying sister. Guilt. It’s a normal part of grieving; I must keep telling myself that, but what about greed?

Andrea was greedy at the end – greedy for custard and Tunnocks teacakes and moisturiser and massages and tears and pyjamas and tantrums and sunsets and me. She devoured me, tugged life from my hands, and I read her a story that told her this, told how I struggled to cope, but I hid the truth in a mantra, hypnotised her with a sentimental lie.  That story, that cheap trick, won 3^rd place in a competition. I never want to read it again.

me and mum

15^th November, 2007

Had a bad night last night ? tumour pushing up stomach causing nausea. The District Nurse who came round was not able to take a verbal order from Dr’s to give IM Cyclizine (anti-sickness drug), so had to wait 3 hours for doctor to turn up and give me an injection. Out of hours care is crap! I am not quite sure what the District Nurses do at night. I get so frustrated there really isn’t any support for people who want to die at home. Poor Jue had to stay up until 2 am to wait for Dr and has now not gone into work. I feel such a millstone around her neck, coupled with the fact I am fed up at being alive at times – euthanasia is beginning to look very appealing!

I do get so tired each day. I though the days might drag, but it seems I spend more and more time asleep, accompanied by these awful hot sweats. I am worried I won’t get to finish all I want to do, but I guess to some extent that is down to me and I don’t feel ready to go yet!

Seeing RP’s house tomorrow, if I feel OK. It’s odd but I really don’t feel any jealousy towards his gfriend. I have moved on, it’s ALL about ME now and no one else. That does sound selfish, but in reality when I am at this stage in my illness I MUST be entitled to some. I do hope when I have died RP begins to realise what he did and has done (I actually believe his is beginning to see that now).

Mum and I are beginning to realise together, I think, that NOW is the chance we have to become closer than we have been. I initially blamed her for a lack of affection/ communication, but I have recently realised it takes 2.

When we went shopping two things happened that we both found comforting. Mum put my shoes on and pulled up my socks, people usually forget to do this for you. I told her this and she was apparently really chuffed. The other more significant moment for me was when we were at the till. I was tired so leant my head against her arm and held her hand. At one point she needed to let go, to get her purse or something, but she didn’t let go for long and found my hand again. She relayed both of these instances to Juliet, and I am glad she did, I guess Juliet is the closest friend that Mum has.

My party is on Sunday, I want all my friends to be in the same place and celebrate some of the times we have had together. I also want them to keep in touch with each other, I suppose as a way of keeping the memory of me alive.

Dead tired

14^th November, 2007

06:00 - Marie Curie nurse here overnight. She’s OK, but not particularly caring.  I keep waking up coughing and I am worried they won’t treat me, but at least I have done my living will. I am so tired and can begin to see a time when I will just want to be dead. Everything I do, except opening TUNNOCKS, makes me so tired. At the moment I able to make my own decisions, still can talk and laugh... (crossed out words)

08:15 – clearly I was half asleep when I wrote the above. Just finished my ready brek – gorgeous. I know I asked for a big bowl, but i think ½ of this would be fine!! Jue you are a star putting up with my whims.

JUE POST 1

My first memory…

…is of whitewashed stairs. I am at the bottom and the sun is bright, but the stone is cool under my thighs. I press my hands into the whiteness and then to my forehead.  When I ask Mum about this memory, she says it was the cellar of the German house we rented and that she spent two days painting over the grey concrete.

I learn that Germany was not a happy time for us, mum missed England, and the job dad went out to do was not as advertised. All I remember are the cellar stairs, a nursery school with wooden shutters sat in a clearing in some woods, and a rocking horse with a painted dappled coat and silky grey mane. I spoke German, so Mum says, we both did. I was two and Andrea was four.

Sometimes, the memories tumble through a hole in my head so fast I can’t hold on to any of them.  And then a jolt like a electricity hits me in the chest and stops my breath. What if I forget our memories? I am the custodian; I am the only one of us left.

In our grandmother’s house of rising dough and clocks that ticked and chimed; where cars made shadows across the front bedroom wallpaper turning swirls into hooked nosed men; she cut my hair. I let her, I think. Afterwards, I patted my head and felt a wodge of bristles where a sliver of hair, that fought the lay and turned blond in the sun, used to hang – my bit of summer.  She chopped it off with a pair of black handled scissors, got from where I don’t remember. Maybe we had been given them to make paper dolls. Maybe she snuck into the kitchen of Monday twin-tub steam and slipped them behind her back, whilst our parents talked in low murmurs in the front room of net curtains, sugar sandwiches and musical matinees; about schools and hotels and other things that come from leaving Germany as if we committed a crime, rather than made an honest mistake. I was three and she was five or maybe six – for it might have been in the three weeks of every year when I got left behind.  It was summer I am sure of that, or are all my memories filtered through a sunshine haze?

Archie the dawg! 

Every day he climbed on her bed for a hug.

12^th November, 2007

Felt like shit this morning. Short of breath more than usual and generally down. My Leonard Chesire carer came in and made me feel a little brighter. Couldn’t bear to have a shower as it is too tiring, so I smell sweet everywhere except my hair.

Jo came round to be with me today. She really helped to cheer up my mood as she is such a good listener, and you can hear in her voice how much she cares. I’m beginning to get scared that the tumours in my stomach are starting to impede my breathing or even worse cause an obstruction, although with farting all the time, this is probably OK.

The closer I get to dying the less I want to be near it, despite all my brave talk. What will it be like saying goodbye for the last time? I have to hold onto my belief that there is somewhere I will go when I die and from there, I will be able to see all my friends and family.

20:00 feeling very down this evening, having some pain under my L lung. Spoke to Jue and had a wash. Took some oxynorm and lorazepam and feeling more positive. Keep getting short of breath, especially when eating. I am a little, make that a lot, frightened of waking in the night SOB, and no one being there to help me. I can hear my chest wheezing, but to be honest that has been there for several months, before my first admission to Isobel.  We haven’t been able to get a Marie Curie nurse this week so far, we need to follow this up tomorrow.* I am surprised about how frightened I sometimes feel.

I am so sorry for my writing being scruffy and erratic, whoever is reading this (I suspect it will be you Jue), but though I am so tired I need to get my feelings down.

*I hated leaving Andrea on her own at night (she slept downstairs and we used a baby monitor, so she could call me, but she never did) and though she was initially reluctant, we got the District Nurses to arrange Marie Curie nurses and she soon appreciated them being there. You can’t get the service to cover every night and there is no guarantee of which nights they’ll come, but for 2-3 nights a week, I was able to sleep much more soundly, and Andrea got her cup of tea at 4am.  As for MacMillan, I can honestly say I don’t know what they do? I was under the impression they co-ordinated care at home and made sure the patient was getting everything they were entitled to, but from our perspective, they did little more than bring some leaflets round. 

Shopping!

11^th November, 2007

When I have a good day, I can almost believe I can carry on like this for awhile, but then reality hits home and I remember I am dying. I am not going to get better, but worse. My R leg is swollen and I am sure my circulation and oxygenation is not great either. I am so frightened of being in severe pain and on my own when I die. I want to be asleep, with... [unreadable words] Oops, fell asleep whilst writing this!

Jue and I have decided to keep me on bed rest today to help the pain and swelling in my legs. So far so good! It is now 2pm and have just seen G&C for a quick visit. I love being here in this room, right here, right now. The sun is shining, but it is a cold autumn air. I miss the feeling of the wind blowing on my face. The one thing I have realised about writing my very scruffy thoughts here is that it is just the simple things in our lives that matter. Talking to friends and family, not about anything life changing, but trivial stuff.

I am trying very hard to take the good whilst it is there and still managing to have a laugh. RP wrote a letter to Tunnocks, explaining my recent addiction and asked them if they would send their products to a dying woman (this was/is precisely why I love/d him, doing crazy things). They sent me a huge box of teacakes, marshmallows, wafers and a crystal glass... they asked for NO publicity, I assume they are worried they may get inundated with requests. I also went out shopping again (twice in ONE WEEK), with Mum and Dad this time, as I wanted to get a present for John. Not really sure what to get him, ended up with some sweets and Jamie Oliver gadget, he does cook, every now and again! (John of you read this, I am not in anyway being derogatory about your cooking)

It’s so hard when you feel well, I feel like I could be here living with Jue for some months, and then BANG all of a sudden pain strikes or I haul myself up the bed and it reminds me I am dying and the cancer is spreading. I don’t want to die, but I do accept this will happen, however I want everyone to know how special they are and I am going to put in a concerted effort to write more letters, so I can leave everyone with some of my love.

My next goal is to get to my graduation ceremony on the 20^th November, and I dare not think about any other dates, like Ashley’s birthday and then of course, Christmas. Why oh why is life so shit at times? Of all the times, I love Christmas and decorating a real tree.  I remember the first year RP and I got together, we were a bit skint, so I decorated the tree with cinnamon sticks, red apples that I polished and orange rind! Needless to say he took the piss, and I have never forgiven him this.

TODAY, RIGHT NOW, I am acutely aware of how much I want to live. Why now, I am not sure, maybe because of my legs swelling and showing yet another symptom of this bloody cancer, after so many years, rearing its ugly head.

I love you Juliet, so much for just being you. I have been able to face up to it all so much, I just hope you are getting the support you need.

Up and down

10^th November, 2007

Had an up and down few days. The funniest (perhaps not for my carer) was when I accidently farted in her face! On retelling this to Barnaby he found this hilarious! (I was embarrassed, but at least my bowels are still working, as I do worry about intestinal obstruction). The day before yesterday, I had a shaky/ tired day. Knocked my breakfast on the floor and felt so useless and stupid. Thankfully it wasn’t long before another of my carers* came in, and she gave me a big hug and let me cry. This was so what I needed.

I just get so frustrated at times because I am not able to do what I used to, mainly because of tiredness but also the fact my R leg is getting weaker and my R knee has swollen up (and today I think my ankle as well). I haven’t knowingly hurt it, but it did collapse underneath me on Thursday. It was the first time I had decided to go OUT to a shop. RP took me – he would be confident and spur me on, which he did. When I collapsed, that feeling of utter uselessness at age 39 swept over me and I just burst into tears – thinking this is not fair! Both RP and John were able to pick me up and I did go shopping and managed to spend £200!! I really don’t care, usually i am so worried about money, but there seems little point as they say, you can’t take it with you.

*It’s not like in the Soaps and films, there is no definitive prognosis, no way of gauging when or if you should give up work and care full time.  During November, I continued to go to work (though negotiated going in ½ hour later, which involved another member of staff doing my registration) and coming home if I had a Study period after lunch etc. Andrea was not only frightened of being alone, but also needed increasing help with daily activities, so somehow we cobbled together care, with a mixture of Leonard Cheshire carers and Andrea’s and my friends. In hindsight should I have said ‘sod work’ and stayed with Andrea? I don’t know... work was also a break for me, and all I would have done is transfer my guilt, by leaving A-level students to fend for themselves (hard to get a qualified psychology teacher at short notice). I guess you do what feels right at the time, and I think Andrea would have felt guilty if I had given up work. One thing I do know is GUILT is a damaging emotion that everyone experiences at some point in the grieving process. Knowing it and dealing with it, are different things altogether, however, part of the reason for publishing this diary is so I can explore my guilt and see it for what it really is.

Being pampered

4^th November, 2007

NJ came round this morning and helped me wash and dress, and most importantly smother me in cream!! My friends helping me in this way is the best thing they can do for me, although I have to admit it is an odd feeling at first getting undressed and asking them to do intimate things. BUT, I don’t dwell on it and hope by being as natural as possible it helps put them at their ease. NJ has made me homemade carrot and lentil soup, what a star! I am certainly getting loads of pampering in.

NJ does find it hard when I talk to her directly about dying, and I am truly sorry for upsetting you, hon, but this is my way of coping with my cancer. I talk about it to make it real, and to make sure I have spoken to all of you about your fantastic friendships and love for me.

Having yet another HOT FLUSH! Bloody awful. I opened the patio door and stood just smelling the Autumn air and listening to the last few birds going to sleep. I must start being a bit more organised in what projects I am going to do. I think I might print off some photos and get some contemporary frames, to give as Christmas presents.

Oops! Went a bit off topic there. What I wanted to say was how I love the smell of the fresh air and just ‘being’. I find myself wondering how does the world carry on in my absence? Of course it does, but it is such a weird sensation, knowing that life and everything in mine will go on as before – perhaps you will be pleased, those of you who I have nagged or been bossy too!!*

*Andrea bossy? Never ;)

Andy in Mumbia, one her fave pictures, January 2005

2^nd November, 2007

Had a fairly good day today. Marion and SM came round. Marion is off to India for three weeks. Last week neither of us thought I would be here on her return, but now my pain is under good control, I really do think we will be able to talk about her trip – I am so jealous, she is going to the East of India, which we never got too!

The girls at work are all wanting to come over and help and despite the lack of dignity, I do need help with washing. I will email them and ask for them to arrange times to come over. BUT what happens if this goes on and on, for how long will they be willing to help? I obviously can’t ask this, but it is a question that goes round and round in my head. If I put myself in their position, I would have to think very seriously about how much time I would give up. It will take most of them an hour to get here in the first place.

Managed to clear my email inbox, so will start emailing people and perhaps even do a bit of internet shopping. The trouble is my energy levels are so low, by the time I’ve started doing something I am knackered!

First day back at home

Aunty Andrea teaching Ash and Barnie CPR; though when she said lie the dummy down, I don't think she meant Barnie...

31^st October, 2007

18:00 – First day back at Jue’s. Went OK, a bit of breakthrough pain this pm, but I think that is because I do tend to walk on my crutches more, which exacerbates the spinal mets. This is what I find so frustrating as I have things I want to do, but getting from A to B takes ages and then sets off some pain!

Ash is sitting in my room doing her homework. I am happy that she is not frightened of me and what is happening. She does seem to enjoy talking to me. Barnie, without fail, always kisses me hello and goodbye, which I love him for. Having cancer visibly for as long as they can remember must make it easier for them, I suppose. *

Dad and I have decided to sell my flat and get rid of the car. This makes a sense of finality kick in, even though I know I can’t live on my own, it seems like my life has shrunk. I know I am not the first person to have to face this, but I don’t want to get into a cycle of depression, just waiting to die. I am going to arrange regular aromatherapy and reflexology through SS and I still have all my letters and memory books that I want to give to people, and I think I will print off and make a record of my travelling, which I never got round to. I have also asked to see the MacMillan Nurse as I want to talk to her about helping with teaching like I did, and perhaps could still do, at Graves House in St Albans.

Whilst my mind is still ME, I must use it!

*Andrea’s cancer began in her parotid gland, which is just below the ear and close to her jaw. Five years before, she had undergone surgery to remove the tumour, which meant destruction of her facial nerve and loss of muscle and tissue in her cheek and behind her ear. She coped with this in the way she coped with everything else, matter of factly and without self pity. I hesitate to use the term facial disfigurement, because it implies the person is damaged, maybe ugly, but Andrea was never not beautiful and her lopsided smile became her trademark.

Home at last!

Pandy on Republic Day in Mumbai, 2005

30^th October, 2007

Home today! I am really looking forward to it, compared to the last time, I feel we have set everything up much better.*

18:30 – At Jue’s! Feeling very tired. I guess it is just the emotion and physical movement in getting home. RP came and helped me to wash and stayed with me until I got to Jue’s. I can see how much he loves me, I didn’t ever necessarily doubt it, but I am surprised at the depth of how much he does miss me. My mum and dad have also been able to see this too, which I am glad about, as I hope they will be able to meet up and talk and laugh about me!!

Had a hospital bed delivered, which I am glad about, as it will mean I will get a much better night’s sleep and as I deteriorate we all ready have it sorted! Ashley and Barnie have had good fun pressing all the buttons. I thought it might look a bit clinical in the room but it doesn’t.

Tired, going to get to bed early, though by the time I have washed and changed it will be late anyway.

Glad to be here, surrounded by my stuff.

*Andrea is referring to leaving Isobel Hospice in Welwyn and coming to mine, but after a week she and I both got scared and pain control was not good (she was either in pain, scared of being in pain, or practically comatosed on diamorphine shots. Either way, we needed help or we might have bumped her off early by accident - oops), so she was admitted to the local hospice (St John’s) to sort out the pain relief and make the room she was returning to more suitable with the right equipment. I felt such a failure, after only a week, she was back in the hospice, but both of us were determined to make it work this time.

The value of being me

Andy, August 2nd 2006

29^th October, 2007

Had another good day! Heather and Marion both visited and have made me see the value of being ME! Thank you both so much.

Today is the start of the last part of my life, which I am going to enjoy – being with mum and dad, Jue, John, Ash and Barnie and ALL my friends. I don’t feel like I have a few weeks left anymore*. I do feel like I have the time to be a bit more productive. I will use this time to grab hold of every moment and try to show EVERYONE that it IS possible to have a dignified, even happy death. I know there will be good and bad days, but most importantly there is time to do and say what I want to.

We all have to die, but I seem to have been given the chance to do this at my pace and where I want (as long as pain control remains as it is). I just want all of you who love me to know that it has been a privilege to know you, love you, work with you – whatever with you... I will take all of your memories with me and smile at you from wherever I go.

*Andrea is referring to the prognosis she was initially given after her emergency admission to the Isobel Hospice, where constant pain had worn her down and they tentatively suggested no more than a few weeks. Just goes to show that no one really knows and Dr’s are not psychic. My advice, try not to fixate on how long is left (easier to say than do), and keep making plans. One of Andrea’s biggest fears was being left to die alone, being forgotten. A person who is dying still wants to do and take part in all the things that have defined their lives up to this moment. Andrea and I planned various projects, including a photo album of our family. Both she and I wrote comments and captions under the pictures and it also made us remember our childhood; we laughed a lot. I was not the beautiful swan I am today (vain, me?), unlike Pandy, who was blonde a beautiful from day one.

hurry up and die

28^th October, 2007

18:00 – I feel very strange. Still got this heavy dragging feeling in my sacral area, NOT pain, just discomfort. My abdomen is distended on the L side, so I know this is not all in my mind – BUT – I feel so positive, like I did before going home the last time. Now I worry that I will end up with no flat, no independence, living with my sister, which she (+John) will begin to despise me for. It’s at times like this when I feel fairly well that I think my friends and family will wish that I had died, so they can get their grief over with and continue with their memories of me.

It is such an odd feeling of wanting to be alive and continue to be of use, BUT then working out what and where my purpose in life is now. I really don’t want to be the sick disabled person, BUT ultimately what do I do now with my life? I do still have a job, though not sure that would be possible, given that sitting on my bottom is a bit tricky! I could use my experience to produce some videos etc, but this has been done before, and it could be a bit boring, hearing me droning on and on.

I must STOP this NEGATIVITY. Life, as I have said before, is for living, no matter how small. I’ve just got to get other this phase and look a little deeper inside about what I could possibly do.

I feel good!

28^th October, 2007

04:00 – C had borrowed a gown and mortar board for me, so we could hold the degree ceremony. The actually ceremony is not for a few months, but by doing the photos at Jue’s house has made it real for mum and dad and me. C even had the real certificate mounted.

11:40 – feeling incredibly positive and amazingly well today! My bottom still feels like it is about to fall off, but not in a painful way. My R leg comes and goes, BUT I DO FEEL FOR SOME REASON SO MUCH MORE LIKE ME!

I actually feel today like I could live longer than just a few weeks. I cannot wait to go back home, to be with Jue and John and the kids.

JK came down yesterday, I had wanted to see him, just close that part of my life. Despite everything he does seem happy, with work still dominating his life! He hasn’t changed a bit.

When I feel this good, I feel at odds with being in a hospice and that I am wasting a bed and all the care they give me. I really want this part of my life to be of purpose and use, within certain limitations. I will try to take a photo of something or someone that allows me to leave some of me behind and write a bit about it*.

I really cannot describe to you how different I feel today. The gloom that had come over me, which I think a lot of was fear appears to have lifted. I think that’s in part due to going home yesterday and being in my room at Jue’s house surrounded by my things. There is so much to life, which I have just taken for granted, assuming it would always be there.

The red leaves swirling and feeling the autumn air on my skin is glorious!

With the help of Heather, Andrea chose a photo from her travels for me and John and mum and dad and got them framed– on the back of each one is a special message. Mine told me to follow my dreams and I am!

Graduation!

27^th October 2007

11am – Going home for a visit (my room at Jue’s) and my mock graduation!!

Woke up a lot in the night, with the strangest feeling that I am well and there is nothing wrong with me. I am just faking all this. Such a strange sensation. It’s as if when daylight arrives the heaviness and gravity returns to my body.

What a miracle this would be, if this were not for real. What would I do I wonder? I think I would do some things completely differently, despite enjoying my life, I would take this opportunity to try jobs and hobbies I have never tried before.

It's never too late!

Andy at the Tajmahal, 2005

26^th October, 2007

18:00 – Jue and Ash just left with NJ and her children. BUSY DAY! The University have let me have the MA in Education, despite not handing in my dissertation. I am so thrilled. It just goes to show that I can be called

Andrea (MA/Ed) !!

And it is NEVER too late to pursue and follow your DREAMS!!

Just finished my tea – not as ravenous today – largely due to the hot flush that I’ve had since midday. Oh well, at least that means I must have sweated off enough calories to have another TUNNOCKS!!

I love looking at the sun setting, when you can see the outline and different colours. It looks so peaceful. This is what I find strange but reassuring, when I die the sun will set as it always does, but I wont be here to watch it. Maybe I’ll get an even better view OR maybe if you look in the right place you might see me!

Each time I look at the trees against the almost dark sky, I see a different image. I’ve just looked up now and it as a man and woman in a passionate kiss!

I am truly beginning to believe I am not frightened of being dead. Life whilst we have it is for living, and as long as you don’t harm others, to do with whatever you choose. I know I have been all too keen to comment on how people lead their lives, but the beauty of having this time to just think is a real luxury. I know it is the simple things that make all the difference. The way someone smiles at you, or holds your hand, this is what REALLY MATTERS.

The love affair with Tunnocks teacakes begins...

Andrea in Jaisalmer, 2005

October 2007 (again no date, but around 24th)

Looking at how over the past few weeks all of my friends and family have helped one another, they will all play their part. What I am beginning to realise now is that it is the simple pleasures of just being with another person; how they make you feel when they are in a room with you – that is friendship, purely and simply.

I am feeling quite upbeat tonight, this is just ANOTHER part of my life that I have to go through, and I do sort of hope that some of what I have written may help you. It helps me, strangely, to face right up to what is happening.

I have lived a full life, achieved probably more than I ever thought I would/could, and surrounded myself with the most amazing friends and family. So you see, when it comes to your turn, you too will have some good people around you, so go on out there and LIVE LIFE TO THE FULL!!

20:20 – There is so much more to life and living than just being in a body. Bits of me that used to work don’t anymore; my R leg is getting markedly weaker, bowels are bloody awful, and I can’t hold very long conversations! I can really understand why elderly people are ready sometimes to accept death. Just got back from the bloody toilet again – CONSTIPATED – hence my feelings!

Talked it over with a nurse, she listened to me rambling on, which I am sure must have been scintillating the amount of times I repeat myself. Right! Back to the more important things in life – TUNNOCKS TEACAKES!* I have one left and I am savouring it.

*When Tunnocks heard about Andrea, they sent a huge box of teacakes and every other chocolatey product they make as well as a commemorative glass (which Andrea loved and used as toothbrush mug). They asked us not to thank them publicly (in the press) as their purpose was not to get publicity, but I will thank them here. Dear wonderful person at Tunnocks, you have no idea how much that box of goodies brightened Andrea's day and she never ran out of Tunnocks teacakes again! Thank God!

despite this dying lark...

Daisy and Boo, Southwold

October 2007 (no date, but around the 20^th)

22:00 - I am not sure I have the inclination to sit and talk into a microphone, so I here I go again

EXCEPT

This will be the last version!!

Sitting in St John’s Hospice*, the nurses are handing over very loudly. I think they have found a spider!!

I have just eaten my 3^rd fig – you would be proud of me Jue (+Mum), but it still hasn’t had quite the moving we wanted!

4am - Often awake at this time for a cup of tea.

13:45 – Jue just gone – with me all morning at the hospice. Had a fab bath and then Jue spent loads of time putting cream on my legs, feet and hands, despite this dying lark, you do have a fantastic excuse to ask people to do things for you.

I am enjoying my close friends and family just being with me; reading, talking amongst themselves, holding my hand, massaging cream into my legs.

17:30 – Managed to get some sleep. RP came into visit for 3 hours. Sad at times. I do believe I will be able to watch over him, But I am not worried about him. I have lost that feeling altogether.

*At Moggerhanger, near Sandy in Bedfordshire. It needs to raise one million a year to remain open. Fundraising in Bedfordshire.

Dear Jue

Taken by Andrea in Antigua

Dear Jue,

I just want to document some of my last feelings for everyone to read. You may wish to use it at the ‘celebration of my life’ (Not) funeral, or just keep it somewhere safe to read when you want to think about me.

This should be kept with all my other scrappy/bitty journals and diaries – in that basket. I would rather they are not separated – But anyone can read them. (Although there might be some sex stuff that may not be quite OK for Ashley and Barnaby to see – But don’t get too excited, I am sure that you and John have done far worse!)

Sorry about the scruffy writing – but give me a break!

Pandy XX