At 8:40am this morning Mom passed away in her sleep. We are still sitting around her as we write this and she looks so serene and peaceful. It has been such an awful fight over the last five months and we are so relieved she is no longer in pain.

The messages and thoughts that you all have shared with us over this time has been such a source of strength for us and mom. We can't express how much. Thank you all for the huge amount of support you have given

We were sooooo close

With only 3 days of Radium treatment left (and 5 days of chemo) Joy's platelet count dropped to single figures (evidently, it should have been closer to three figures!) requiring that all treatment had to be stopped and Joy spent most of Friday in a day ward getting platelets gradually infused into her system. Her platelet count will be checked again tomorrow morning (Monday) and, all being well, treatment will continue where we left off. Joy was beginning to feel like a cyclist in the Tour de France and looks forward to being drug-free very soon.

Meanwhile Cape Town is cold, wet and nasty anyway, so being in bed is a pretty good place to be... not that England looks much better, but at least we have winter to blame (our thoughts really go out to everybody affected by the floods). So lots of R&R and keeping warm in bed is on the cards for the last leg this treatment. But our eyes for fixed on the finish-line and our spirits are strong so expect more soon.

Lots and lots of love...

No Neukes is gonna be Good Neukes

Sorry I've been a bit slack with the web-page-site-blog-thing recently, but as the chemo and radium therapy comes to the end (only 8 days to go!), things have really gotten tough for Joy. Because the effects are accumulative, she needs so much more rest now and can't believe how much sleep she needs. Fighting nausea is often her biggest battle and we're literally counting the seconds until we're free of the daily radium/chemo routine.

We've got a little getaway planned to club Mykonos with the Hermans' family for a few days soon which we're all really looking forward to. Not sure exactly when but everything is kinda on hold until the treatment completes and we can do all the things we've been promising ourselves. Thanks so much for all your support, prayers and good wishes. They mean so much to us, especially right now.

Off with her wig!

On Wednesday, having visitied the oncology unit for treatment, the girls there convinced me to enbrace my new image and be brave enough to leave my wig off, for me a security blanket I thought I would never be able to do without. However having taken the step, it really it wasn't so bad, in fact it was quite liberating! Now I am learning to accessorise with pretty earings and makeup which I have even been told make me look so much younger and quite funky... that can't be bad can it! My dear friend Suzi from Switzerland who came out specially to be with me at this time, is staying with us for ten days and has been truely wonderful, giving her input in so many ways, not only is she a great Homeopath and Midwife but knows so much about the oncology treatment I am getting and has been invaluable in helping me augment it here. It's been so good talking to her and learning about the way things are handled in Basel and sharing that with Dr McAdam here who was most accomodating and positive. She goes back to Switzerland on Thusday and we shall really miss her. I feel so loved and supported by my friends and family and I thank you all for your wonderful messages that have been so important to me. I shall never forget your kindness and hope that soon we will be sharing more than this blog together.

Have Sushi - Will Travel

Saturday night was incredible! Rolf and Phil organised a brilliant sushi chef called Harry to come round to our house and prepare the most delicious Japanese fare. After two hours of solid eating, all nine of us staggered away from the dinner table having eaten ourselves into an absolute coma. Harry certainly knew his stuff and we all, Suzi Arne Trevor Lucia Barry Neil Joy Rolf and Phil had a wonderful time. Many many thanks to you both for an unforgetable evening. It was The following day (Sunday) Joy walked the length of Camps Bay beach (for those who know it) and for good measure, she walked all the way back again! Sushi power rules!!

Calender Girl

After her operation, Joy had great difficulty knowing what day it was and lost the plot entirely from time to time. Thats where Rene Hermans stepped in. He constructed the most amazing calender for Joy and it has really been an enormous help in keeping us both on track. Lorna Morrissey has kindly loaned us a Bemer mat that Joy lies on several times a day and instantly erases any feelings of nausea. What incredible friends we have. Deeds like these have beaten the life out of my cynical armour plating that has served me so well all these years. We are humbled and overwhelmed by all your continued love and support. Week two of radiotherapy and chemo, draws to a close and, touch wood, nausea is pretty much a thing of the past. Our loveto you all.

Let the Chemo Begin

Tuesday morning was the beginning of chemo. Instead of just giving me some pills, they handed us the entire dispensary to take home! (See the picture of me outside the Oncology dept) So much has happened since then and we have been backwards & forwards to Constantiaberg hospital daily for radium therapy which doesn't hurt, but makes me feel (and look) a lot like Hannibal Lector. Having to be stapped in so that i can't move my head at all. With the mask they have fitted me with, I must look pretty scary. The first day was a big learning curve for us as we were told to experiment and see what the best time of the day suited me to take the chemo capsules. I took them early on day two (wednesday) ...... big mistake! I thought was done for but hey, I'm still here! Things have got a lot better since then and I have felt a lot less nausia and thursday was much easier, so things are looking up and I had a constant stream of visitors coming to wish me well. Gayle gave me a foot massage and Hannah gave me reike which made me feel very pampered. Today, (friday) is the end (briefly) of radiotherapy for the week but the chemo continues throughout the weekend. I fall asleep at the drop of a hat but I'm told the way through all this is lots of naps. I love hearing from you all so much and it really makes my day. Thank you for your love and good wishes. xxx

Sunday 17-06-07

Hi everyone, what a fantastic day yesterday! So much has happened and it's all been good. I got to go to the nursery twice, once with Neil in the morning to buy some compost and again in the afternoon with Lucie and her mother Anna for lunch to buy some plants for the garden. Apart from getting me out into the open in the lovely sunshine, it was great to bump into friends there & just chat to people I haven't been able to see for a while.

This blog is absolutely wonderful and I am so enjoying getting all your messages and reading all your news. I still find it a bit taxing as my sight is very disturbed but I am assured that in time this will sort itself out. I feel as though I need a lot more water with my gin (I wish) but being able to go out and about for even a short while is wonderful & puts a smile on my face.

Life is good and I intend to make the most of each day because there is so much to be greatful for. It still seems odd not having to get up in the mornings or go to work, or get up in the in the middle of the night to catch a baby, but I look at this as getting time off for good behaviour, I've scored on the brownie points big time!!!

On Tuesday next week I start my chemo and radium therapy, and I look forward to evicting the unwelcome tenant very soon.

The Rollercoaster called Life

Neil: Hi all, after a pretty shakey weekend, things seem to have been brought back to what passes for normal, with both determination and large doses of cortisone. So, sorely in need of some cheering up, and after a quick manicure and pedicure, we all took off on Tuesday night(12-06-07) to the Madam Zingara's Theatre of Dreams (thats a circus to the people wot don't know!) It was Bohemian, it was loud and it was fabulous and we all had a brilliant time. Not often we get home after midite these days. Following morning was a patchwork re-union at Jenny's in Pinelands. All her old buddies talking about working on a new project with Joy in the coming months. busy busy busy! Joy popped in on her well baby clinic this morning(14-06-07) and got to see some familiar faces and babies again. Food for her soul!!! We're off to the neurosurgeon later today and treatment is due to begin early next week.
Joy has asked that I thank you all for your wonderful messages of support. You have absolutely no idea how they inspire her and cheer us all up....thanks

Time to take off the gloves and get tough

After the oncological chat on Monday with Georgina McAdam, Joy is booked today (8th June)to have a model/mask make of her head (for when the neuking process starts) also a CT and MRI scan and then we're home again. We still have a few scores to settle with the nursing staff at Constantiaberg, who were way beyond wonderful. So we shall pop in and see them at the same time.... The lengths we go to to get an afternoon off!!

Dear everyone,
I've just been trying to catch up on life via this incredible multi media format. and i cannot find words to express my gratitude to you all. I am totally overwhelmed by the countless messages of love and good wishes that have poured through the internet. it takes my breath away! These past few weeks have turned our lives upside d0wn and inside out it's true, but with so much love and support, friendship and kindness from all over world, how can I fail to get better!
We have a wonderful team of doctors, who we are going to see today at lunchtime to discuss the care plan from here and so the journey to health and a better life has begun.
I am grateful to each and everyone of you for your unbelievable interest, input and positivity. I love your energy and thrive on all this attention so keep it coming, it's a lifeline to us all.

Good morning everyone, how wonderful to wake up to a wet and wintery monday morning and have nothing better to do than lie here and listen to the rain falling outside. cape town is waking up to the sounds of cape talk, and i have a day of r & r in front of me wrapped in the arms of my family. Why did nobody ever tell me about the virtues of retirement until now? of course I can imagine that in a few months i could become bored of this life of leisure, workaholic that I am, am will need to find other creative pursuits. Getting back into my patchwork being top of the list as it will improve my motor coordinationskills.

Time Out Day

Neil: Other than having her stitches out and no pain killers all day, not much new happened yesterday. Today was a different kettle of fish. Trevor and Lucie arranged a picnic and took her mum Anna, Joy and Me to Groot Constantia for lunch on the grass in the afternoon sun. Emma did mom's make-up we whisked her off on a breathtaking ride via Camps Bay. It was a magical afternoon. We were surrounded by balloons attached to kids running here and there.

Trev: We ate and sang while Dad played guitar and my folks and Anna got to spend some time getting to know each other better. As Mom keeps saying, every day is a gift, this was one gift we all soaked up and appreciated infinitely. I realised that, as the saying goes : if life is what happens when you're busy making other plans, then I was done with making other plans and more days like this are on the agenda. Gorgeous!

Joy: Great day of excitment today as we get ready for Emma-Joan's arrival. Jolene came early to get through her work for the morning and organise for clinic. And my darling daughter carrying a pharmacy in her bag of immune boosters and stuff like that arrived mid-morning. We got news that Hanna is arriving in a little over 2 weeks and Suzi is coming in a month. Plus we're picking up Anna (Lucie's Mom) who arrives tonight come to help out with stuff.

Emma-Joan: It was great to see mom sporting the Sinead O'Connor look and carrying it off beautifully. Sparkling blue eyes and clear skin plus positive attitude lifted my spirits immeasurably. I then proceded to rush out and purchase more natural remedies and organic food, then set about cooking dinner for the entire family. The reunion was wonderful and more than worth the trip by a thousand times! Coming over was the best decision I could have made, being back home feels so right. I love home and I love my family so much!

Neil: Joy is getting through her very specific physio exercises three times a day and is definitely improving ... really great to see, and tomorrow we're off to Constantiaberg again to get the head stitches out. Busy busy busy.

there is no place like it

Hi everyone. Just got home from the hospital and still feeling a little bit spaced out as my visual field is not clear yet. Thank you all so much for all your loving thoughts and wishes and messages. You have no idea what that means to me and I know it is going to be part of my ongoing healing process.

I have been ordered to stop working and start being a lot more self-indulgent which is a difficult one to get my head around having always been the caregiver but I will do my best to surrender to allow myself to take the next steps forward.

I have such a wonderful family and they are my inspiration and my driving force. Looking forward to chatting to you all as soon as I can.

All my love
Joy

Homeward Bound ... its official

Never mind prison break... this is hospital break.
Yes its finally going to happen. Mom comes home tomorrow! I think I'm looking forward to it almost as much as her. The staff of the Neuroscience ward have been amazing in making sure she is comfortable and happy. She's getting her stitches out in the morning, then we'll sweep her off to all the comforts of HOME.
The Herman's family did a wonderful thing by giving mom a digital picture frame loaded with images of Greece (the promised land) so she can keep her eyes on the prize. Big thanks to them for the gift that keeps on giving.
So from tomorrow on, its going to be Joy herself writing these blogs from the comfort of her own bed. We really are counting the seconds until she's back where she belongs.
So stay tuned for the real deal...
Trev & Neil

It just keeps gettin' better

Another brilliant day! Other than Joy, no-one was more delighted than me. Trevor and I took Joy on a ride in the gardens again (climatically, another sensational day) A couple of laughs, coffee and a chat with a few very inquisitive geese set our day up nicely. Back to her sumptuous private ward (organised at normal rates by her amazing friend Kate) for some physio. Isaak, the physio man put her through her paces and she seemed to cope very well. More of the same tomorrow. Lucia arrived with armfuls of fruit and then on to Auntie Trevor's Fantastic Hospital Made Fruit Juice (an alarming machine that Trevor uses to concoct out of this world fruit drinks for Joy on site) a few visitors, lunch and a kip! After supper tonight, Joy had her first bath since the op, almost entirely unaided and thoroughly enjoyed it. It’s so humbling how Joy feels the need to keep thanking us for stuff. Her friend Gayle says that, having been a nurturer all her life, it is so difficult for her to receive nurturing. News Flash for Joy "Get used to it!"

Sunday...beautiful Sunday

What an absolutely brilliant day today! Saturday was by far the lowest point in her recovery. Joy was so nauseous on Saturday that Rodger Melvill came to see her, gave her some pain control and her first cortisone since the op, and that seemed to help. Today she was bright and cheery again and we all went for a wheelchair excursion out into the hospital's picturesque garden. It was a gorgeous sunny day and Lucie did her nails. Joy was wonderfully animated and we had a few fun hours chatting and laughing in the unusually warm winter sunshine. We took a laptop and showed her your incredibly supportive messages. They mean so much to her. A few quick visitors and an early supper and Joy was ready for sleep.
We are hoping to have her back home by Tuesday and there seems to be every possibility of this happening. Joy gets tired easily so we will need to work out some sort of system for visitors and just know that you will understand. Give us a call (0834127838) if you want to drop by or just wait until she's feeling stronger. We will of course let you all know as soon as she's able.

Come Saturday Morning

Trevor: Mom was a little more tired today. We just let her sleep the whole day and tiptoed in and out as that is what she needs most. Sooner she's properly rested, sooner she's home. She loves receiving visitors but it does tire her right now. She has a huge craving for fresh fruit and veggies so even although the staff have taken to calling her bunny, she only orders greens for meals and I've brought a super juicer for fresh fuit juice and an abundance of fruit.

She surfaced properly tonight and Dad sat with her for dinner before getting thrown out at 8:30. We're back in the morning so more news then.

Neil: There really is no easy way to put this. Dr Georgina McAdam (our oncologist) feels that, given the type of tumour and the level of agression displayed by it, chances of a complete recovery, are very very slim. We sat, shellshocked as she outlined her opinion and our treatment options. Joy was adament. She feels that, whatever time is left her on the planet, it is to be lived with as much positivity (and joy) as possible. As things now stand, Joy comes home early next week and treatment (radiation and chemo), begin in a fortnight

Trevor: This sparked the most dramatic improvement in Mom's condition since hospitalisation so far. I walked into her room later today and found her walking all by herself. She regained strength and confidence and effortlessly displayed the will of someone given a new lease on life. Mom instantly made plans for the whole family to meet in Greece soon. Thank you again to all who have left messages on this site. We read every one to her. Your love and support is humbling.

Tomorrow Tomorrow...... Oncology

Who would have thought that going to the loo twice in one day on your feet would have been an achivement to both blogg and brag about? Well it was ... and it is! I think its a dignity thing mostly, and hey, who am I to question that? Tomorrow Friday 11am when. apart from Dr Melvill, we get to see Dr Georgina MacAdam. Probably doesn't mean much to most of you out there but, if you spoke to my friend Rolf Andrews (one of the founder members of her fan club) he would tell you a thing or two about both her dedication and her abilities. So, as I said, here we are, entrusting our destinies, the rest of our lives, to certainly, two of the most highly recomended people of all time. They are going to tell us what do (and how to do it) from here on in. To all of you out there, your constant messages are a source of inspiration. Please don't stop them coming and give us a thought tomorrow when we break new ground and learn to take our medicine as they deem fit. Lotsalove Joy and the team

Hi everyone

Trevor here: Dad and I just spent the morning with Mom. She's been bumped up to a private room by the staff who are being amazing and helpful. Oncology has studied the tumor and discovered its a grade 4 (which means its fast acting). We're meeting with the Ocologist tomorrow when we hope to be told how much chemo will be needed and how often.

As for how Mom's feeling, she's been unplugged from the drips and stuff and she made her first steps in 3 days across the room and back. She's feeling more and more coordinated every day. Doc says she might come home as early as the weekend which will be brilliant.

We've added a new gallery if you hadn't seen of Mom's hair being cut and then one or two of us in the hospital afterwards. In fact pretty much every page has been updated in some way. Mom wanted me to let everyone know that her clinic and her classes are continuing in her absence. Lorna is taking over the night classes starting next month and there is a highly capable sister on hand during clinics to handle immunisations. And of course the lovely Jolene who has been brilliant is there.

Mom's resting now but we'll see her later and I'll post more tomorrow once we've spoken to the oncologist.

cheers!

I was only 24 hours from brain surgery

We're back from the Constantiaberg and its difficult to believe that Joy is only just over 24 hours past her operation! Her speech is clear and crisp. She seems a little photophobic and sound sensitive. Also mentioned that her food was 'much too tasty' ... hello this is a hospital!! You'll find tasty food somewhere down the road... not here. I tried to tell her about the sheer number of people who felt the need to tell her by writing in her web/blogg/link/page (whatever its called) how special (and loved) she is in their lives. Gotta say I got a bit choked up but I find hospital air can sometimes do that to you. I was pleased to see that it affected some other people similarly. Trevor and I hope to meet with or at least speak to Dr Melvill tomorrow sometime just to get more of the 'low down' on exactly where she is right now and where we need to go from here. Dunno if it happens to any of you but I turn into a complete blithering idiot when speaking to a doctor about an issue of consequence like this ... its like when your son tries to explain something about a computer ... hey maybe I am a blithering idiot !! (Revelations Chapter 1) I can't begin to describe to you how pleased I am at her improvement. What a lucky guy I am!

Dr Melvil for president!

Dad and I just got back from the hospital. It was indescribable to see mom smiling back at me. She is in ICU with excellent care and we're told she's doing very well. Very drowsy but she just surfaced long enough to say hello and move about a little. It will take 48 hours for them to study the sample of the tumor which is when they can develop an accurate course of Chemo and what kind of tumor it is etc. I've not spoken directly to the doctor but he said he'd get as much of it as was safe. We're just so relieved to have the operation over and mom back. she really is the strongest person I've ever met.

Dad and I also went through all the messages people have been sending. It is overwhelming to have such love and I can only feel that all the simultaneous thoughts we are all wishing... are really helping. thank you everbody. We'll print out everything tomorrow and read it to her.

So more tomorrow. G'night.

Operation Successful!

I'm going to have to write these for Mom right now but just to let everyone know... she just came out of surgery and is moving her hands. Doc said all went well and nothing unforeseen happened. Going to get more info later tonight so stay tuned. They took a sample of the tumor for Histology which will give us much more information on how to treat this from here.
-trev

Hair today... gone tomorrow!

The journey has begun hey? Feels strange having short hair, but not as bad as I thought it would be having loving friends around to make it fun and light-hearted. D-day is tomorrow lunch time so I shall be a sleeping beauty on ice for several hours. Wish I could be a fly on the wall to watch it all but I shall be out of it I guess. But in good hands, that I know.

A big thanks to everyone for all your good wishes, love and support. Your friendship and kindness means so much to me.

See you in my dreams for now and keep me in your hearts until we can be together for a big celebration of life.